Archive for June, 2008

Pushing the envelope

Sunday, June 29th, 2008

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I sleep in now. For the first time in decades. I just can’t jump out of bed and do the mom stuff. Cereal and toast your own bagels will have to do for the older kids. Clay has to be with Naomi overnight or Kelly has to be nudged out of his coma for daddy duty. I am awake in the middle of the night due to pain. And to take pain meds I have to eat some kind of food or I get very nauseous. And then I end up “awake”. So my days do not start until 10 or 11am.This seems indulgent to me. As a mom there is something selfish about sleeping in. I know parents who have done it but I always thought them to be “bad” ones. Surely, an awake child needs an awake engaged mom or dad. Kelly is somewhat engaged…I think. It does not relieve my guilt. But it still doesn’t mean I can get out of bed. I want to hang out with the kids.My time is sensitive. And still I sleep.

I spent several hours yesterday filling out birthday cards for the next two years. For all of them. A different card for each child, each age. Filled out with different color ink. Cards that were chosen specifically for that child. Birthday cards from heaven licked and sealed awaiting a future uncertain for my children. I wasn’t sure if this was even a good idea. Would it make them cry? Would it weird them out? Should my time be better spent engaged with them? I did spend time with Bailey playing games. Tuck and I are spending time together today. Jesse and I hung out but he barely spoke. Always a quiet and sensitive boy talking with him can be like pulling teeth. “Jesse I am too tired to figure out the right questions to unlock Pandora’s box”, I said. “Ok let’s play a game”. His only comment was that I was lucky to leave this world since it such an awful place. “Don’t kill yourself please”, I responded to his truly morose statement. “Oh no I won’t”, he assured me. Whew crisis averted. We played Boggle and I won.

We went for a visit to Don and Sheena’s ,with our youngest two kids, while the older boys went to see Devo(A family favorite) While we were there I went in and out of sleepy sick to my stomach mode. Combined with sweating and headache. Leaving the house is getting harder and harder. I feel like I am just overwhelmed by it all. Car sick, too much activity, etc. I don’t like to eat. I don’t like the heat. I am tired. But I don’t know what that means because I am still pretty feisty. I spent a good 20 minutes yelling at the top of my lungs when the boys failed to come when they were told to. Kelly said at this rate I will live forever. As long as my children need me. It is so hard to let go. I am a mom…I want to make the rules and have them followed from beyond the grave. After a lot of finger pointing and he said she said Jesse was in trouble. As was my ex-husband. Whom I tried to have a civil conversation with regarding curfews and such. He argued for 15 minutes that they were having a good time blah blah blah. I said, “I don’t care if you all were partying with Jesus next time call and find out what time they are supposed to be home.”

So some things never change. Everyone has an opinion and some of them stink. Like the drama the came out in the last batch of comments. Nonsense. I am dying. I can not stand such petty displays. Do you know it costs $1,000 to be cremated? And we do not have it. Nor do we know how we are going to get it. Bailey is in need of braces but is 1 point shy of getting through medical assistance. Her teeth are bad. We will find a way to finance them as well. And then there are shoes. Clothing for school. How dare someone say we are not “in need”. Yes we did fine before I got sick. But now that my husband has to/is working less to be with me and I do not work and we spent a lot of money on childcare because of my illness we are in financial difficulty. Thank you to everyone who has helped. But for the woman who thought we did not need any help shame on you. You have no idea.

But I am far from expecting anything. To the contrary I am very happy with the blessings and rarely worry about any of it. And it is my faith that keeps me from worrying. And keeps me smiling. And I am allowed to mention religion and money all I want on my blog. My story my rules. Don’t like? Go home.

bittersweet

Thursday, June 26th, 2008

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There is so much to write about but both Andrea and I are exhausted. I was tired out by 9 am and still saw the pirates exhibit at the franklin institute with my parents and some of the kids. Clay was content to walk around holding my hand and looking at piratey things with me. Then he did some hardcore flirting with a little girl his age as we ate at whole foods. It was adorable. He was in the highchair on wheels with a little girl in a stroller at the table behind him. He pushed out with his legs so he could roll his highchair over and gently touch the hand of his new friend, then looked back at me and giggled then reached back to her. This went on for four or five minutes (a toddler eternity). I get it, I too feel that childlike warmth when I look into the eyes of my wife. I wanted to stay engaged with her this way for an adult eternity. I am seldom sad when I am with her, but I cry frequently alone at night. I am strong, I will not break, I have been through a lot of hard times in my life. But I know that someday soon I will lose an irreplaceable friend and tender companion. At this I like to think I cry like a man, Passionately with all my being, my heart and my anger. I love those Kids. I will not break.

The hospice nurse came by today and we discussed the hard stuff. My wife could die at any time from the massive swelling in her neck and face. This may not be a pretty death. We went over emergency meds and how to keep her from suffering. This is the main reason that have stopped working all but one day a week. Let me be there , let me find you. let me clean you up and hold you for a while, let me give you the drugs to ease your pain as you slip away. let me be your husband and love you till the end.

Summer is here and the kids have a million invites to really fun stuff. I fear for them that they won’t get the one on one time with Andrea that they need. I encouraged them all to each stay home from one event this week and have some hours of one on one time with their mommy. I told them that they should say everything that they needed to say and cuddle with her as if it where the last time. I told them to steal her phone and answer it “I’m spending time with my mom, she might call you later.” I really fear how hard things will be for these kids if they don’t get the closure that they need. Remember they have always and will always come first. I had them write in their names on Andrea’s calender till Tuesday, so if she doesn’t return your calls please know that she is doing what most of you love her for in the first place. Being the best mom you know.

thank you and much love
Kelly

“Hos-piss” by Tucker Collins

Thursday, June 26th, 2008

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Hospice

A word with all the powers of a magnet

Drawing things together

Somethings are shunned and wish to be repelled

But they always return

Others are accepted easily

But can never come back

Everything attracted has something in common

Power to express emotions

Love

Pain

Fear

Last wishes-like fire-are warm

But too much fire surrounding one self becomes

The source of more love

The source of more pain

The source of more fear

The smoke becomes a heavy blanket

Smothering its starter

To reduce the burden a stand must be made

One of courage where friends may be hurt

You can piss out the fire

But you cant piss out the pain

Great difficulty lies on the path where you try to be kind and loving

But sacrifices must be made

To live the rest of ones days with only the closest people to their heart.

Wednesday, June 25th, 2008

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This is my official best of blog badge. I think it is supposed to go somewhere permanent. I will try to figure that out. In the meantime thanks for reading, thanks for voting and thanks for praying. All my love, Andrea

Too much of a good thing

Wednesday, June 25th, 2008

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Okay I know I am loved but right now I am getting over 60 phone calls a day. And too many visitors. That stay far too long. I have six children and a husband (who has stopped working to be with me). And I have spent zero time with my family. This is very overwhelming and has to stop. I just need you to understand these are my last moments with my CHILDREN. They are more important than you. I still need my core group of helpers. I will name you if I must but please give me the chance to grieve with my children. I do not want my last days to be spent entertaining my adult friends. Sorry. If you are not sure if this is directed at you, text me and I will tell you. Love, Andrea

So now that I have calmed down here is what I have to say. For the next week my husband’s mom and dad will be here as well as my special-like-my-mom Naomi Landau. Kelly will be off as well. We do not need any childcare for Clay. I need no help for me. And you should not come by without asking me…me.Not Kelly or Naomi. Me. If I do not call you back…no visit. Exceptions..Ed, I will see you here for acupuncture Monday. Tamara, Penn Charter visit Monday with the folks? Megan can we visit the house on Wharton? Sheena you may see a group of us this weekend. Some of you are my core group and actually welcome anytime. To spare feelings I have not written them. Please be respectful about my precious time with the children. I love you and need you but can not put you before them.

And maybe I will linger for months and grow tired of my children and beg for you to keep me company. This is how I feel today. Give me some time.

Getting it out

Wednesday, June 25th, 2008

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Jen 21 took a week off from work to be with me. To help me. We went everywhere together. We took the kids to the movies twice. She cooked for me and ran errands. She called my hospice workers and made appointments. Today she took me to get my colonic. A colonic is like a really good enema that forces water into the colon and with gentle suction removes old waste. Mine worked wonders and I felt tired but unclogged when it was done. Typically, this out of hospital procedure is expensive. I was prepared to pay the fee but when it was over the owner said they would not be charging me. They asked Jen about me and my situation. They knew I was on hospice. Jen showed them my blog and they decided no charge. She cried. So did I. This is my life. Being eternally blessed by the universe until the day I die. The place is called Health Connections by the way. They are at 540 S. 2nd St. here in Philly. I may as well plug them for unplugging me for free.

We had our family meeting with bereavement counseling. Laura was very kind. She will come to the house weekly to talk to us. Ultimately, she felt we were far and away ahead of most families encountering this kind of tragedy. She was impressed that the children could express themselves and that we were really talking about it. I think for the most part the kids were listening. She asked about how they cope. And Alec said talking to his friends. Jesse said music. The twins said talking through it with me or Lizz or Eileen or Jen. I think Kelly was hoping they would say him, but I think they know he is grieving too. Its too painful to even talk to one another about it. But that is all temporary. Years from now they will have each other as support. I have every confidence that they will all emerge like a Phoenix from the ashes. Stronger and more determined to soar.

Ed came to my house on Monday to do a treatment on me. He put a bunch of needles in my ear. I was really out of it, detoxing from oxycodone. But I realized today that I was in a lot less pain. I have trouble turning my head due to the enlarged lymph nodes in my neck. Lower back pain that makes it hard to bend down. And a lot of fatigue. I am sleepy a lot. For this reason the baby is not with me very often. I have very little ability to keep up with him or even do much parenting. He watches a movie with me and snuggles about once a day. Most of his care has been turned over to Naomi and Jenny Ball along with Kelly of course. I have felt that it is important that since they will be his “mommies” when I pass it is important that that start now. For his sake. Then its not sudden or detrimental. It makes me happy to see him so bonded and comforted by them. I know he will be a healthy happy child. I spend a lot of time with my older kids. I still hang out with them as much as possible. My friends eat up a lot of time that I could be with family though. They call. They text. They drop by. They want to hang out. I want to see them too. But I am struck by guilt. How do I balance my time knowing I may only live a few more weeks?

For the most part I am not scared or angry. I do not fear death in any way. My sadness and tears flow when I think of my children growing up without me. But I trust the Lord and His perfect plan. Years from now many of you will know my children and all they have accomplished. Maybe you will be able to make sense of why God chose this for me and them. Maybe in heaven God will heal my broken heart and I will not wonder for long.

keeping it together

Monday, June 23rd, 2008

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My friend Jesse and his wife Rebbecca came in from St. Louis on Saturday afternoon.
Unfortunately, it had been days since I was able to go to the bathroom. I spent most of my time taking natural laxatives and sitting on the toilet with a sour stomach. The end result, not much except the knowledge that opiates that give me pain relief are really the culprit here. I could not get a doctor’s note for my colonic Saturday. Something had to give. But nothing did, I felt sick. I stopped taking my opiate meds. Things finally made their way through me. My decision to not take drugs met with a lot of resistance from friends and family. I “yelled” at Alec to clean his room and all of the sudden I’m a bad guy. Kelly decided I was going through withdrawal. Not a single factor would be considered. Truth is sometimes death is very isolating no matter how wonderful everyone is.You know that death is a place you go alone. And it’s easy to get jealous of the healthy. It’s easy to say, why me? Even when I am totally at peace, I get tired of making this ok for everyone else. I want somebody to make it ok for me.

So as uncharacteristic as it may seem, I have done a lot of crying. So much that my eyes are swollen. I have not entertained my guests at all. They have hung out with my kids. We played Apples to Apples. They have walked the dogs, they went to breakfast with Kelly while I had a nervous breakdown. And thankfully I felt well enough to go to the premiere of Hancock the new Will Smith movie.The character is immortal. I was dreaming about what it would be like to be immortal. To never have to deal with any of this cancer drama. I want my big happy healthy spirit to go into a healthy cancer free body. I feel like there is so much life left in me.

My friends are leaving in the morning. Our visit was short and sweet. I was happy to see Jesse one more time. I also saw Rosanna Friday night. That was lovely too. I appreciate short visits. Even drop bys. But long visits from people who do nothing are just the worst. I need help with medicine. And the kids and the puppy. And if you don’t know how things are done than ask somebody or don’t come by all day. 20 minutes twice a day is the new visiting schedule. It allows me to be present and available for my kids. I do not feel bad about this set up. And if you are just coming by to say hi, you have 20 minutes. I think that is enough. Tomorrow I am getting a colonic at 2 pm. I got the doctor’s ok note. Then at 4 the hospice agency is sending their bereavement counselor to talk to the kids. None of them are excited by this but I am certain it is good for them. So tomorrow is a busy day.

The rest of the week includes visits from nurses,counselors,and social workers. My husband is off. There are folks coming to say hello and bring meals. I can handle some visits. Call me or Naomi to see whats up. Love Andrea

Grin and bear it

Saturday, June 21st, 2008

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I took the time to very carefully read through all the comments on my last entry. Wow, I don’t even know what to say. It is a beautiful thing to know that I have had such an impact on so many. I always say that I really just thought I was keeping this little on line journal that a couple people would read. In the last several days nearly 1,000 people a day have been reading the innermost details of my life. And as I anticipated the stream of guests is now constant. When my friend Rachel entered hospice she said it was like having a 12 step support group but it was all about her. I loved that. My situation is a bit different. I still need to focus on Kelly and the kids, as well as assuring my friends that I love them. Assuring my mother that she is loved too. I am not sure why everyone seems so vulnerable right now.People are apologizing for not being “perfect”. Who wants perfect? Not me. I only want perfect from the Lord. I am pretty into imperfect. So if you are one of my friends that think you have failed me in some way…get over it. We’re all good.

I have seen my hospice social worker and nurse.Those visits took a good bit of time. I was thankful that Naomi and Tamara were here to help me. I feel fuzzy and overwhelmed at times. My dear friend Jen 21 has been here a lot as well. Helping me get through the day. Which is a big job really. I am still in good spirits. I am still laughing. We took the kids to see the new Adam Sandler movie.I felt a little sleepy but I was able to enjoy it. The fact that I can do these things is such a wonderful gift.I am a bit leery of leaving the house. The neck cancer makes me look like I have a huge double chin. And the lymph edema makes my left arm look 10 times the size of the other one. It causes me a certain amount of embarrassment. My appearance is still very important to me. I hope that doesn’t sound shallow. I feel less and less like myself all the time. Just as I did early in treatment when I was bald and gaining weight. It is hard to look in the mirror and see a different me. Especially since I had just lost a lot of weight, regrew my hair, and adjusted to my flat chest. The cancer in my neck is uncomfortable and rather disturbing as it seems to grow daily in size. I know that this should be the least of my worries…but it is one of the unexpected things cancer does to you. You expect to feel sick, not look sick. Or distorted.

Beyond this my pain is slowly getting under control.At least some of the time. I am still a bit limited in my mobility. I tire more easily. And I feel sick to my stomach more often. I drink mint tea. I take pills.One day at a time.The nurse from hospice is consumed with making my pain lessen,but the pills are hard on my stomach. And I would rather have some pain and be present, than no pain and be out of it. As I type my arm is swelling and my fingers are cramping. I can’t do much more. I just want you all to know that I am feeling happy quite a lot of the time. I feel like hospice a way to feel control over my life and death. If that makes sense.

So now is the time to visit. I pick up the phone when I can. Thank you for loving me. Thank you for caring about me. And thank you for all your support. You have made this last year so much more bearable.

Prep work

Thursday, June 19th, 2008

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Yesterday I was able to see my twins graduate 8th grade. After the ceremony I saw a dear friend who I have not spoken to this last year. She was dealing with a lot of her own issues and I was not able to be there for her. We cried and held each other. I thought she would reject me but she did not. I was very thankful for our tearful reunion. The ceremony and party were wonderful. I spent time with a lot of lovely friends and family. Jeeter’s mom and sister were there and my ex-mum in law sat with me for quite awhile. She lost her son John last year right after my diagnosis. She also lost several of her siblings to cancer. She was with all of them when they died. She and I had a lovely talk. A very healing time considering that I never felt like she liked me when Tony (Jeeter) and I were married.This was due I am sure to a lot of insecurity on my part. In any case it was wonderful to have her company.

Cancer has made my heart softer. It has made me able to forgive and move on. I chose to not speak to my “family” although I have totally forgiven them everything. I just feel they are very negative people who would only continue to harm me and my children. But I hold no anger or malice towards them. Only a desire to not have them in my life. My friends are my family. They are the sisters and brothers I always wanted. Surrogate family that I have fulfilling relationships with. These are the folks who call,cook,clean,and care for me.

Last night my pain,headaches,and nausea were so bad that I decided I could not do chemo today. Nor any other day. I have maxed out my ability to do more pain/sickness inducing treatment. I am done. I will just do full time hospice. Kelly cried so hard but he agreed with me. So did Naomi and Jen. I held Kelly as he wept. I know this is hard to hear but my spirit is very tired of being in this very sick and dying body. The pain is very bad. My hips,back, and front hurt. Like labor it comes in waves and reminds me that my body is doing invisible work. Labor always had an air of excitement but also a component of a near death experience. This is more like a real death experience. But an excitement too that soon my pain will end and I will be free to move on. Hallelujah.

My time now I want to spend seeing my loved ones. Holding my kids. Blogging when I can. And writing. Writing all about my love for you. I want to leave you letters that you read over and over so you will know I am thinking of you too. I wrote a final blog. I planned my memorial. I gave away many of my possessions. This is a gift. How fortunate that I can plan these things. I got an entire year to plan for my death. A year to prepare my children. You want to hear a real punk rock mommy parenting tip… I always believed that it was not my job to raise good children but rather to prepare my children for adulthood. Everything you teach them as children ought to be for the purpose of having them be strong, healthy, and independent adults. I told Asa that I was not going to do anymore chemo. He cried. I asked him if he was scared and he said yes. I asked of what and he shrugged. I said I know you are but there is nothing to be afraid of. I said what did I always say about my job as a parent, and he repeated my mantra. I said you are prepared for adulthood Asa. You will be a wonderful and strong man. And this experience is part of what will make you who God wants you to be.

People are sad. My children and friends and husband. I am sad that I have to leave..but not that I will get relief from this disease.

Der Pink Panzer

Wednesday, June 18th, 2008

This year for the Trenton Avenue Arts Festival, friends of ours decided to up the ante from last year (last year they built a pirate ship…with a water cannon) by building a full sized German Panzer. today…Asa, Tucker, Vinny, and I began painting it pink camouflage…ENJOY!!!