Archive for December, 2007

Big Love

Monday, December 17th, 2007

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I didn’t want to write a new blog. I didn’t want to move beyond Kelly’s love letter to me. Our marriage has been so tested by my illness. I doubt that there is a married couple out there who could say any different. And now we are still finding our way through this ordeal, but I feel we are trying equally hard to find the joy in the everyday…together. Friday was a test. Clay threw up all over the Philly car share. It was due back in 30 minutes, we could not extend the time and it there was vomit everywhere. Kelly’s parents were in town and both he and I had scheduled appointments. I was due to get an MRI that I had rescheduled twice. He was due to get my Christmas present. We argued, I felt one of us should remain home with the baby. In the end Kelly canceled his appointment but not before I hurt his feelings.

He had planned on having a portrait of me put on his forearm. An old idea that I had always thought was wonderful. But now my feelings had turned to the future. A future woman who might love Kelly and my child and not want to stare at a picture of me every day. The thought pained me. I did not want him to get it. It was not a “present” for me. It felt like a burden. He was crushed. Hours later in the MRI machine I wept. I thought of my life. The crappy men that I had for fathers and boyfriends. My crappy relationships. My longing to feel “loved”. When I met Kelly I met my soul mate. He loved me and knew I was not perfect. And he wanted to “immortalize” that by putting a portrait of me on his arm. And I told him what a bad idea it was, but really I think I just thought I was unworthy.

When I became a Christian I had to relearn what a Father was. Mine had always been unkind and negligent. I had to find out what unconditional love and acceptance were. I did not have the faintest idea what Grace was or what it meant to be loved just as I am. I wept often after my conversion. How on earth was it possible that God could love me just as I am. But He does. And for that I am grateful. And because of that love I do not have to settle for crappy relationships in which people hurt me. Or allow people to say things that destroy my self esteem. I am a child of God. Not your daughter or your sister, God’s own child. And I deserve to be treated well.By the same token I know I am also called to treat others well. And love people just as they are. My children, Kelly, my friends.

Sometimes I am treated so well that I am overwhelmed. I feel that all around me my friends have become angels. Taking me places. Caring for me and my family. People keep giving us money. God is providing for us perfectly and I want for nothing. I sometimes feel unworthy of all this love. But I feel equally unworthy of the unkindness and neglect that flows from my family. And the challenges I still feel face from old crappy relationships.

Love is a learning process I think. I am learning how to love and forgive those who hurt me and love my enemy. I am also learning that it is not what I say or do that makes me lovable in the eyes of God, but merely that I love His son. And in my home I am learning how to let myself be loved and love my husband and children deeply without reservation. And with my friends I am learning how to allow myself to be loved. And accept that the people who I thought would always be there have faded away and have been replaced by people who love us and care for us perfectly.

As I cried to Clarence and Lhianna tonight about how sorry I was to ask them for yet another favor they both reassured me that they had no intention on going anywhere. I did not have to explain why I needed help it was there. I think it is hard to love someone who is needy. It is hard to love someone who will die. It is hard to love and be loved. But it is crucial. These days I wish I could tattoo all my loved ones portraits on my arm. Immortalize my love for you. I am blessed.

empathy… a love story

Friday, December 14th, 2007

To err is human. As humans sometimes the only thing we can do right is to love. I love you when you are right. Just as I love you when you are wrong. I sometimes think that love means not making that distinction at all. It was always a little hard to put myself in your shoes. You who always has a plan within a plan. You who keeps a calender and a clean house. You who loves order. I just paint everything in much broader strokes, spontaneous, chaotic, and improvisational. That is how I came to love you, in big bold reckless strokes. I thank you for frequently allowing me to disrupt the delicate tapestry of order that you weave. I know it was hard for you to let me in.

Now it is so much harder for me to see the world though your eyes. I frequently pray for empathy or some Divine insight. I feel the weight on my heart , head and stress knotted shoulders. The weight of sorrow and of fear. It hardens and desensitizes me. I know that is small compared to the the feeling of loss that you must experience. Loss of breasts. Loss of control. Loss of dreams. When we are close I feel strengthened by love even when you are sick and I am feeling spread thin from trying to take care of every thing. Funny how we can get our strength from the ones we help in their moments of weakness. I will always be there for you. I will do my best to make order of the things that slip beyond your control. Things will not always be the same as if you had done them. I paint in broad strokes. You may need to step back and see the big picture to see that everything is going to be just fine.

I love you

Kelly

Hit me with your best shot

Thursday, December 13th, 2007

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The benefit on Monday night went very well. I heard that everyone had a really nice time. I was sick so I missed out. Ozzie Perez ( tattoo artist,Body Graphics) did a painting that I wanted so bad. It was of a girl with boxing gloves on that said keep fighting. She was black and blue. She was a warrior. I wanted that painting to not be auctioned off but rather hanging in my living room. I want to believe I am a fighter..worn and scarred..and still fighting.

Sometimes I say that when I die I want to go to Valhalla. It’s where the Vikings believe they go when they die in battle. I am a warrior. And no doubt I will die in battle. Kelly says that I have to go to Christian heaven because I believe in Jesus. Not that I would mind that, but the idea of being carried to Valhalla in the arms of a Nordic Valkyrie is very dramatic don’t you think?

And I rarely think of myself as strong. Mostly because I feel like I whine and complain way too much to be considered strong. But something inside me knows that in spirit I am nothing less than a warrior. And a fighter. I am pretty sure in the end cancer will win, but in the meantime I am giving it all I got. I want to do everything I can to get my cancer under control. To stop the spreading. To get time to be with my family.

I think part of the fighting is going out with a smile on my face and enjoying the day. Part of it is remembering to live. Being part of what other people are going through. Keeping a joyful spirit. And fighting the negative thoughts that creep in. I fight to stay positive and have hope. And when I am exhausted at the end of the day I crash on the couch, proud of how well I got through the day. Even fighters need a nap.

A friend called me today and asked me about praying for God to do a miracle and heal me. My friend wanted to know what I thought about this. I will tell you what I told her. I think that God does not need to heal me to prove He is good. I think that I will live exactly as long as He wills it. I pray for God’s will to be done. I believe that there is a perfect plan in place set forth by a benevolent and loving God. And if it is His will that my testimony include a miracle it will, but if it does not than that is ok too. I am totally accepting of however this fight ends. I do not even care how many rounds it goes. Its me and cancer in this ring , you all are spectators. And if God steps in, fine. If not that’s ok too. In my heart I believe that we are supposed to allow God to work in our lives, even in ways that we do not understand or enjoy.

Just because I talk about death and do not expect a miracle does not mean that I am not fighting. I assure you I am. I am taking tons of toxic medication and dealing with all its side effects in the belief that it can and will heal me, even if only for awhile.

I do not like having cancer. But it has taught me a great deal. And it has allowed me to bring information about my disease to a great number of people. People in the medical field too. It has allowed me to share my faith. And it has given a great sense of urgency in repairing and renewing relationships. I am still very human and very very fallible. But I accept that this fight has been good for me.

And I am not totally alone. There are many people in my corner. They are with me every day. Some pray. Some bring food. Some paint awesome pictures. Some take me to appointments. Some take their clothes off ( Hellcats!). Some just call to check up on me. Many leave comments on the blog. And some hold me and remind me how good life is and what a tough chick I am. And one gives me some good lovin and makes me happy in a way none of you can.
Cancer is a fierce disease. It is tricky, smart, and tenacious. I hope that a cure is found soon. If not for me than for other people. I hope none of you has to get in this ring. I am not trying to make my self sound great cause I have this sucky disease, I just know that it takes everything I have right now to get through it. And I am fortunate that I have a lot of people in my corner helping me out.

Comfort Me

Monday, December 10th, 2007

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From the time Clay was very young he liked to take the ties from my wrap dresses and rub them on his cheeks. Clay was I guess a self soother. He just used the silky ties to comfort himself. So when I would lay next to him to put him to sleep I would hand him the ties and he would suck his fingers and fall asleep. When I was leaving for California in September I decided to give him a silky brown and pink nightgown to hold onto in my absence. By the time I returned a week later the nightgown had become an “attachment item”. Not unlike a blankie…well unlike a blankie because it is a piece of lingerie.

My husband was less than thrilled that his son was very attached to a nightie. He got over it. Now it is sort of funny, a family joke. If it is dirty we need to find something similar. A cheap satin pillow case. At the nanny’s house she gives him a silky slip. And when Clay was sick over the weekend we had to bring the nightgown with us. A big pink and brown sexy nightie. We’ve considered altering it or modifying it in some way so that in no longer is an obvious nightgown. So far we have left it intact. Clay loves the nightie. It helps him sleep. He is very attached to it. It brings him comfort.

One of the hardest things though is that Clay is my only child who ever required such an item. Not that there is anything wrong with it. Its just that I have been sick for most of his life. I had to stop nursing him at 5 months of age.I have spent long periods of time unable to be a good mom. I have been unable to meet his needs and provide comfort. I was sick. I was sore. I was post surgical. I was on medication. I was afraid he would hurt my incision. I was tired. Clay has the benefit of having a very attentive and loving father. He has 5 siblings who hold him and nurture him. And he has Jenny, our nanny, as well as a few friends who he is comforted by. I do not think Clay is lacking love and attention in my absence. But I have lost a lot by being unable to provide it.

Unlike my older kids who have long important conversations with me despite my illness, it is much harder for me to meet Clay’s needs. And I want to. I long to. I want to be well enough to change all his diapers, feed him, and carry him around. I want to have the strength to take him to the playground or on a long walk. I want to be better so that I can cook, clean, run errands, and meet the needs of my family. Mostly I want to bond with my baby. I want him to want me to hold him more than anyone else. Right now that is not the case. It used to be. But it has been a long time. I want to be an attachment item. I want to be a source of comfort. It breaks my heart that I can not. This is one of the few things that I will admit distresses me.

I have a lot of acceptance about my illness. But more than anything I want to be well enough to be a mom to Clay. A hands on mom. I don’t pray for a cure most of the time. I do pray for remission. Mostly I pray for wellness. Just a period of time in which I am healthy enough to be a good wife and mother. I pray for a break. I want to be a comfort to my family.

Cancer: by bailey

Saturday, December 8th, 2007

cancer oh cancer

why are you here

your eating her up like an apple

cancer oh cancer

please go away

especially because she has to stay

4c’s

Friday, December 7th, 2007

Chemo
It is 4a.m. the day after my second dose of navelbine. I am unable to sleep. I have so much on my mind that I could not get into a quiet space emotionally to be at rest. And I have been up for hours crying, praying and planning. I feel like many realizations have occurred to me lately and my day was filled with a wide array of interactions that pressed on me.

The chemo feels like chemo. I am nauseous, tired, have heart burn, and restless. And even though I am not plagued by chemo brain and chemo coma…I am still on chemo. Kelly and I spent hours today afterward running errands and buying our last gifts. We managed to avoid corporate America almost completely in our purchases and I am very happy about that. But the day left me spent.

Charity
In the middle of all of it I blew off an opportunity to pray with our pastor. And rushed a visit with Mary Lynn who drove 2 hours to see me and tell me how successful the Prayers and Poinsettias fundraiser was. She has set it up as a non-profit organization that will happen yearly and will benefit my children for life. She wrote me an incredibly moving letter ..a promise letter to continue to help care for my children after I am gone. She wrote one for each of them as well with her number and email. She told me that her whole Christian life she had heard Christians claim that God called them to do things. Internally always thinking though that they had just decided to do something. And then God called her to help me and she finally understood. I was moved to tears. Thank you Ruthie, Mary Lynn, May, and Brian for your help and support. It truly does put my mind at ease knowing that no matter what my children will not need for things.

Children
Jesse’s principal called me while we were out. For most parents of teenagers there is always a tinge of sickness when this happens..oh man I’m in trouble. I called Chris Lehman right away. He wanted to let me know that Jesse had been chosen among only ten students in his school to go on a trip to Liverpool England. I cried. Last year he was struggling so hard with everything. This year he is doing incredible. He is in a happy and stable relationship with a beautiful girl that we love. He is doing very well in school. And at home he is an absolute delight. Chris mentioned that his only “concern” was that maybe Jesse was feeling that if he just is the perfect kid everything will be alright. That may be true. But he also mentioned that he felt Jesse was handling my diagnosis with more grace and dignity than most 40 year olds. And that is likely true as well.

I spent a long time on Wednesday night talking to the kids again about the “future”. Reminding them that God’s plan is perfect. Reminding them that they are loved by so many people. That they have each other. That they have a relationship with the Lord. That they should never be angry at God for their lot in life. That God is good. I asked them to help care for Kelly and Clay in my absence. And they assured me they would. And I reminded them that this chemo may work..or it may not. And that is something we will not know for some time yet. I promised them that I will always be watching them as they grow. And that I am proud now and will continue to be for all of their lives. And I told them that what I know now is that they are truly the best things I ever accomplished in my short life.

What I am starting to realize is that while my cancer and sickness is hard on me physically. I am still able to find a lot of emotional comfort. I have acceptance and peace. I have a sense of humor that allows me to see the upside to cancer and an early death. But I am seeing that death is actually hardest on the living. It is why I removed a blog about dying young. It hurts my loved ones more than me to think about my cancer progressing. I am sick. Chemo and surgery are painful and death is a relief from pain. It also just feels good to accept whatever God gives me. But for those left to grieve a loss it is something quite different. And for that reason I am sad. That thought is the only one that has ever brought me to tears. It is that thought that makes me choose to go through a multitude of painful treatments in an effort to remain here to love and nurture my children and husband.

I hope that that was clear and not overly dramatic because it is surely not intended to be. The reality is that my cancer is spreading quickly and I feel I must prepare them and myself for the reality of my treatment failing. To do anything else would be unfair.

Tonight Jeff brought us dinner and a special gift. A 3ft. statue of the blessed Mother. She is so beautiful. I have her in the living room for now because I do not want to hide her away in a bedroom. Kelly was very concerned that Clay would pull it over. I assured him I will move it out of Clay’s reach. Even though I am not a catholic I have always found a true connection to Mary. I love looking at images of her in art history. I like thinking about how she is depicted in the bible. And when I think I am failing as a mother I remind myself that she once lost Jesus when he was 12 years old. And then I feel a lillte better. I make jokes sometimes too. Jesus was perfect and without sin. Even as a toddler. If Mary said “Don’t touch that” Jesus did not touch that. And then Mary and Joesph had real children. Sinners. She was woefully unprepared for real parenthood. Do you think she was the first mom to say why can’t you be more like your brother?

Comfort
So I am going to let this end with the comfort in knowing that this cancer thing is hard on all of us. I don’t like chemo. I don’t like the idea of not being able to be better. But I am doing all that I can to love and cherish my family. And them me. It is hardest on them. But we must have faith. Not necessarily faith that we will get the outcome we want, but the one that we get. God is good. He comforts me. He comforts my children. I pray He comforts Kelly. I am learning a lot about being sick and acceptance of a long term illness. I am learning about finding joy in all the small things. And learning that I need to slow down and let myself be at peace.

Punk Knockers

Wednesday, December 5th, 2007

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For the Girls
Mon., Dec. 10, 8pm-2am. $10. Barbary, 951 Frankford Ave. 267.259.3227. www.punkrockmommy.org

Sex, punk rock, tattoos and cancer make for a benefit as far from the usual hand-holding and tear-shedding 5K walk as humanly possible. Mother of six and blogger Andrea Collins Smith is facing rare terminal inflammatory breast cancer, which is exactly as bad as it sounds. But her friends from every corner of Philly’s balls-to-the-wall community are coming out to show their support and help her and her family. The HellCat Girls, there to put the can-can into cancer, will perform their infamous burlesque routines. There’ll also be a hardcore silent auction, with tattoo art, crafts, paintings and apparel on the block, not to mention busts—as in casts of Smith’s own (now mastectomied) breasts—decorated with tattoo flash by her husband, Body Graphics artist Kelly Smith. The 9.14 PicturesRock School, will screen shorts from the soon-to-be-released The C Word, a documentary about Smith and her family’s day-to-day struggles. The $10 donation gets you a red clown nose, while arriving dressed in full costume renders you eligible for prizes. (Alli Katz)

This was the amazing write up we got in the Philly Weekly. Last week they did a great write up on Kelly and now they totally got behind our Hellcat Girls! So to speak. Anyway, I hope you plan to make a night of it. Some of you will opt out. I have heard you do not think you are cool enough to come. The rest of you better be there!!! With Big red shoes on! We are so thankful to the Philly Weekly (you are so much cooler than the city paper). And a big hug to Jenny Ball, the Hellcat Girls, and the Barbary. I love you all!

Snow Day

Wednesday, December 5th, 2007

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I posted a blog yesterday that you may have read. It was about my morbid interest in my own premature death. It made someone I care for very upset so i deleted it. Just in case you were wondering. I realize that some of what I think is funny…is not funny to everyone. I am sorry about that.

This morning I woke up in bed with Clay and Kelly. At 6am Clay was smacking me in the head. “And good morning to you too”, I thought. We did the hanging out in the living room thing, playing thing, and then I got showered and dressed. Ed came over to give me acupuncture. It felt so purposeful and necessary. I always feel like with acupuncture i can say here fix me! And a lot of the time it works. While I was getting needled and moxaed I let myself relax. More than I have recently. I let myself feel good about what we were doing. Acupuncture always feels like a step in the right direction for me. Not as a cure for cancer but as a way to address my symptoms. I was very sleepy and sore Monday and Tuesday so feeling good today was a gift.

Speaking of gifts. Cindy and I went shopping. Well first to Ida Mae’s for cranberry cream cheese stuffed french toast ( amazing!!!) I ate half a portion. Then to the bank downtown. There is a bank in my neighborhood but apparently they can not read. I say this because they told me that they can not deposit checks from Canada. Seriously, the branch in my neighborhood acted like the check was written in crayon and said it would take 6 to 8 weeks to cash and would cost $75. I said give me back the check. So Cindy and I headed to a finer part of town where the employees of said branch can find Canada on the map. And they deposited said check today and said the funds would be available immediately since my account was in good standing. I made several jokes about the other branch…the teller said I was funny. I do not hate bank tellers! Just the ones in Fishtown. I hope they all cry in their ramen noodles at night while watching dancing with the stars. I also hope at my funeral none of you has the nerve to go on about what a nice person I am…bah humbug.

So then we decided to head to the only place we could think of to buy a coat…The Cherry Hill mall. We did not find me a coat. I am still wearing the sweatshirt/jean jacket ensemble through the winter that I should have retired in the 11th grade. I felt very under dressed for the swankiness of suburban America. Thank God I was with Cindy so at least I was in a mini van with modern features. While we were in Kohl’s I spotted a really cool foot massager. Cindy liked it but commented she did not have time for such things. “I do”, I said. “I sit around all the time. It’s one of the perks of cancer!” The older woman behind me did not think that was funny and she said, hush you should not say that! She chastised me! I said “It’s my cancer I will say whatever I want”. I should have said, “that Jesus is the reason for the season sweatshirt you have on is hideous”, but I refrained since it is Christmas and all. I wonder if she was ever a bank teller.

So now I am home and about to take a nap before my kids get home. I am sorry for anyone I have offended with my irreverence. I am also sorry to the bank tellers.

Ho Ho Ho Andrea

Drugs are bad

Sunday, December 2nd, 2007

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Just to quickly sum things up…I spent the night in the hospital being woken every 3 hours from my drug induced haze for vital signs. In the early morning the intern came in and told me they were waiting to do the MRI which was scheduled for 8pm on Monday night! I was laughing and annoyed….I told him there was no way I was hanging around until Tuesday morning. I spoke with my oncologist whose main concern was my pain control. At that point my pain was being controlled without IV medication and the pain was more dull than sharp. The only issue left was to have the oncology surgeon to take a look at the cat scan. It revealed nothing but some build up of fluid in my chest. Which likely had nothing to do with the pain in my collar bone. So we were back to square one. We have no idea what caused the pain. It could be cancer that is not that yet detectable. It could be radiating pain from my t1 t2 vertebrae lesions.

All things considered it was an awful way to spend the weekend. The food is bad…the drugs are worse. Mainly because they give you mass quantity of drugs and then proceed to ask you very serious medical questions while I was nodding out on them. Every so often Kelly would answer a question and I would tell him to stop talking. Then they would ask what cancer treatment have you received thus far…and I would want him to answer but he couldn’t. Finally, at 3pm today they let me go. But my medicated drama pain phenomenon was far from over. I managed to have a huge fight with my oldest child and be completely upset by my oldest friend. It has been a very long weekend.

But helping me is good. We will need meals through December on even days. If anyone feels like they are up to it let me know. Right now we have meals on the 4th,6th,8th and 16th. If you are up to it please let us know. As of right now I am not physically up to cooking everyday since my bones hurt. The other issue is that our beautiful Lab/Shepard bit the baby. A small nip in the face for no reason. But at this point we feel like she must go to another home. She has been amazing with the kids and very well behaved and low maintenance…but I am afraid it could happen again. I think that her life has been very disturbed by a lack of attention and we really need her to go to a loving home. Let me know if you are interested.

black and white in living color

Sunday, December 2nd, 2007

Today was such a weird mix of things. Andrea is in the hospital again. She has had shooting pains in her collar bone that just came out of no where. She called her doctor and went to the ER this morning. We had planned to take the kids out for a family day and she asked me to take them out anyway without her. We all had lunch and then went bowling and they all had a great time. Even Clay was all smiles (bowling allies have a lot of cool furniture to cruise and everyone held him a bunch). He even made a new friend (“wormy” aka Amelia..she’s 11 months and showed Clay a thing or two about walking…) I’m sure he’ll get there eventually. On the way home I got a call from Andrea She was still in the ER hadn’t gotten a room yet and hadn’t eaten all day. Not a happy camper. I left the kids with my Bro Orion and raced to the hospital with food. I always feel so guilty when she’s in the hospital and I can’t be there with her even if I know that I’m doing the right thing by taking care of the kids at home. By the time I got there she had been admitted to a room and will be there through the weekend. They have Her on a lot of pain killers. Its so hard to see her like that and wonder if its gonna get better or if this is just one of many trips to the hospital. Only time will tell. Thank you so much to all who read this and all those who support us in so many ways

Kelly