Archive for May, 2008

10 minutes in the closet with Andrea Collins-Smith

Saturday, May 31st, 2008

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We thought we would mix things up a little and I (Andrea’s husband, also known as Kelly… sometimes other stuff like @#**%&#!) would come up with 10 questions for my lovely wife.
So on that note….

K: So lets talk about how hot you are.
A: Okay..this is what he said to me the first 5 minutes of our first phone call. I totally was taken aback by that comment 5 years ago.I am still taken aback by it. Who says things like that? Who just blurts out “let’s talk about how hot you are?” My husband. He has no “chip” that tells him to censor himself. He also still thinks I am hot which is kind of awesome.

K: I do, cause you are. About 30 minutes later in the same conversation you informed me that you were a good Christian girl and that I wouldn’t be getting any for a long time (I won’t kiss and tell) but some how that started this year long debate… you liked Christ the savior and I said I didn’t care what happened later and that I was just trying to do the right thing today and favored Christ the teacher. This makes so much sense now. The Buddhists say everything is perfect. In this case I think they are right. Where has cancer lead you spiritually?
A: I am not sure I even understand the question….Spiritually I think I am still pretty into Christ as Saviour. I mean the concept of Christian heaven is still pretty appealing. But I also know that the concept that life is a journey…one loaded with lessons intended to help us grow…that is a big part of my spiritual understanding now. I am really into acceptance. I think that transcends a specific faith or religious affiliation. Only because anyone can see that life is about the lessons we learn. I think it is kind of sad to experience hardship and not get anything out of it. I am really into learning from this intense experience.

K: I think that your trip to New Mexico was in some way life altering if not health altering. I was so pleased with the radiant beauty that returned. It makes me wish we had more alone time. Do you wanna talk a little about what went on there?
A: I think I did somewhat. I was really open to everything that was coming my way. Spiritually a lot of it was outside my element. Outside Christian norms. Tarot cards. Cranial Sacral therapy. I mean I was being worked on by people who were reading my aura and stuff like that. But I was having these major spiritual breakthroughs. I really feel like I let go of all my expectations about what my life had to be…or was supposed to be. I really became connected to the idea that this is my path and it is the one that I am supposed to have. It really became clear to me that healing can happen outside of just the medical standards. I am not sure that it is the femara that is shrinking my tumors or the fact that Paula and Suzy laid there hands on me and manipulated the energy inside my body. That may sound “out there” but it was a really powerful experience. I dreamt about being healed. It was very moving.

K: You are certainly from the old guard of the Philly punk scene. You wanna talk about what being the punk rock mommy means to you and how “the scene” has rallied around you as of late?
A: Well first I was never punk rock mommy until Jon O called me that. I was “Andrea with all the kids”. That is seriously what I was called. Or “Andrea who used to work at Mom’s.” Or “Andrea Jeeter’s ex.” So punk rock mommy is really funny to me. I am though I guess. I mean I was there with 45 people watching Nirvana play at Dobb’s in 1988. So I am pretty fucking old school. But I think that all played into being a mom somehow. I wanted my kids to be radical thinkers. And they are. As far as my scene..they blow me away with their love and concern. These people have totally stuck by me. My punk rock, tattooed, motorcycle riding bad ass friends are here making meals and throwing benefits. And getting tattooed by you. These are the people who show up at every benefit. They call me. They are my favorite people in the world. Where is my sister? Not here. But Ori is. Ruthie is. That is amazing. Don’t judge a book…so the saying goes. I am a perfect example of that. Don’t judge me by my tattoos or any of my friends. I am the luckiest person I know.

Kelly Andrea’s husband: Do you have a favorite parenting story?
A: Oh that is hard. I mean I think it might be a long one. Basically when I had to “run out” for a second I would leave Alec or Jesse in charge of the twins. Once when the twins were about 10 I had to go get something real quick and Alec and Jesse weren’t home. So I told the twins I would be right back. Asa said “Who’s in charge?” I said well “Do you know what anarchy is?” I explained that it was the concept of self government. If every person does the right thing it alleviates the need for outside control. So I said,” If both of you do the right thing, nothing bad will happen and you will each be in charge of yourselves.” They liked this option and I came home to find the house and them intact. Months later I came home and found a note on the table that Jesse wrote. It said,”Mom, I told Asa he had to do(blank I don’t recall the specific) and he said that he is an anarchist and he doesn’t have to listen to me. Please talk to him about this tonight!” I still have that letter somewhere.

K: Do you have a favorite marriage story?
A: Yeah not so much a story. Because I think our marriage has been very sweet and funny. But more just that I have learned a lot about “real love” from being with you. You frequently said in the beginning that you were on my side. And that really resonated with me because I always felt like in previous relationships like I was in a boxing ring. With you it feels like I have a true partner. I think it saddens me to not be able to think about growing old with you. You are so handsome..I want to see what you will look like when you are old. I also really like the tattoo portrait of me on your arm. That is a nice story. You surprised me with that. Really you are a strange mixture of totally inappropriate and sweet beyond words. A story would either embarrass
you or embarrass me.

K: hmmm I thought you were gonna talk about me proposing to you naked at 3 in the morning. (and you thought you were gonna get an ipod for Christmas). As for what I’ll look like in my autumn years just picture Santa Clause with lots of tattoos. Speaking of tattoos, tell us how you got so into being tattooed and maybe how thats become a family tradition?
A: Well I was always a bit overly attracted to carnies, with their greasy hair and tattoos. That’s where you come in. No, I rushed into Philly Eddie’s shop at 18 and got tattooed by your boss. He was like my age then. But yeah I just started collecting them. And then I met you. And you needed a lot of practice in order to get a job at a shop. So I donated a lot of skin didn’t I dear? That’s what a good wife does. Then I was diagnosed with this dreadful disease 2 days before Mother’s Day. Alec was 16. He decided he wanted a mom tattoo. So you and he went out and got matching breastfeeding mom pin up tattoos. Then this years on Mother’s Day Jesse got his Mom tattoo. I say damn right..I had those babies with no medication and breastfed for 2 years they owe me a mom tattoo.

K: two down four to go huh? I remember when we were first dating and I started calling you sailor mom on account of your occasional potty mouth and Asa started saying he was going to get a sailor mom tattoo. I tease you about being a cancer super star, lets talk a little about the blog and how much press you have gotten. How do you feel about all of this? Your little message in a bottle has reached over fifty thousand people if I’m not mistaken. I know that you nominated for a national blogging award and that some of the other contestants have told their readership to vote for you. Is all of this ever overwhelming?
A: Well again I really did not even know what a “blog” was a year ago. I thought this would be like this little thing my friends and family would read to keep updated on my treatment. Then strangers started reading and commenting. That was kind of weird. Then Dr. Dan Gottlieb’s producer emailed me to ask if Dan could call me to talk about my blog. Then he had me on for a whole hour to talk about IBC and me! And I am like thinking how did this happen? Then there was a front page article in the Sunday Inquirer. Then Dr. Dan’s t.v. show. I think it is very surreal. But obviously I have touched on something here. I just thought why do strangers even care about this? But I talk about more than just cancer. And I talk about how cancer feels,or the treatments,or whatever. Somehow people are getting something out of it. I wanted to demystify cancer treatment. Explain what a port was or that there are lots of different chemo drugs. But I also wanted to talk about being a mom and being sick and what that is like. I am really honored about the blog award. I am really moved that Carolyn and the other lady asked people to vote for me. That is wild. I did not even ask people to vote at all. Alec put that vote for my mom thing up. I was just thinking oh someone else will win. It is just so strange that people find any of this interesting. But they do. And I am happy to oblige. I will entertain you all to the best of my ability.

K: So Andrea, Our oldest (Alec, a known heavy sleeper) is on puppy duty tonight and has passed out on the couch with the puppy asleep on his belly (cutest thing really). 10 bucks says that he sleeps through slo’s whining and wakes up in a nice warm puddle. Any takers or do we put the puppy back in his crate. what kind of parents are we? cause you know it’s a pretty amusing bet.
A:I vote crate but only because we are training the puppy not Alec.
K: F those kids.
K: I called this entry 10 minutes in the closet because I was thinking of what possibilities the rest of the waking hours held when we were done here, but also because “are you there god it’s me Margaret” is on Bailey’s summer reading list. Is it to soon for her to think about that stuff? How come I’m comically inappropriate and over protective at the same time? I tell friends all the time that we are really actually kind of strict or at least not permissive. I think the kids really like us though.
A: I agree completely. We do not have cable or a play station. They watch very little television. We make them watch every documentary about Walmart and Enron and all that. And we really know what they are doing.Who they are with. And yet they want to be with us,play games, hang out. It is amazing to me that we have 4 teenage sons and no one has ever been grounded. And for being so mature….they are still really kids. Real kids. Not like I wanna be Hannah Montana crap. Or I need all this stuff to be happy. They are so into real life. Music, people, having a good laugh. We did good! Yeah us.

Random thoughts

Thursday, May 29th, 2008

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It is hard to always put together a well thought out idea and sum it up with a perfect ending. Today I am going to share just a bunch of random thoughts that probaly have no connection whatsoever. The first one is that for someone who will likely die young I moisturize like nobody’s business. I mean I use high quality lotion. And slather it on my face and arms legs. Like I am going to live forever. I laugh at this though I can’t seem to stop. I brush and floss like my teeth are also going to have to last for several more decades. Not likely either. I just think this is some glimmer of “hope”. This is what you all want me to cling to right? This is the evidence that I expect or want to stick around. Either that or I want to look really good for Jesus.

The puppy/baby/dog/six kids thing is like kind of tiring. I am not complaining. I am super stoked about it all but it is making me a little cranky.I am also experiencing a lot of swelling in my left arm and pain on the left side. Which I have mentioned before. I just want to feel better. No I want to feel great. The struggle this whole last year is that what I want to do is feel really good all the time and do all that I did before I got sick. Cancer is very inconvenient. I think if it took up less time and I still had the same stamina it wouldn’t be so bad. But a year of fatigue and discomfort…that’s too long. I am over it. I am over having cancer. It bores me. I want it to go away now. I want my old mom life back. I just want to be tired because I am a mom. Not because this cancer thing is kicking my butt.

Expectations. I am working really hard on putting them away. For me. For you. For the kids. I am working on just letting people be who they are and putting away disappointment based on unrealistic expectations. I think I am good at doing this for nearly everyone. Except Kelly. Poor Kelly. He is the only one who when he fails to meet even the smallest expectation I am instantly annoyed/displeased/heart broken. It is all about checks and balances in a marriage. Check on the good side.Check on the bad side. Which is really such bullshit. I mean can a partner really ever be 100% who you want them to be? That is totally unrealistic. I really can handle this in the puppy/the dog/the teenagers/my friends….why is it so much harder in my husband? Ugly. Working on this.

My lymph nodes still feel smaller. One day at a time. My next scan is on June 12th. I have no appointments this week. I had no blood drawn or anything. This almost feels odd to me. I am so accustomed to just spending so much time in a doctor’s waiting room. This week I just hung out with the dog.

Thank yous are due to several of you. Toni G for providing Asa and Tucker with laptops for the Prep next year. Thank you for coming over with Shep and your lovely son David. Thank you Tamara for my insulin shots and reiki. Thank you Erin for keeping it together around here. Thank you Gina for all that you do. I love that my kids do what you tell them no questions asked…Gina means business! Thank you Ruthie for doing Fridays. Thank you Megan and David for giving us a place to live. Thank you to anyone who is willing to help us do some work on the house. Thank you to Dan Gottlieb for your support. Thank you to anyone who is voting for me in the blog contest. I really never thought I would win,its an honor.And Naomi publish that awesome post that you are working on.

Best of the Blogs

Tuesday, May 27th, 2008

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So a bunch of people have been asking about how to vote for the blog, and my mom has been telling everyone this really obtuse, round-a-bout way of getting to the website. So in an effort to combat my insomnia, I’m posting a link to the website so that YOU too can vote for us.

CLICK HERE
AND NO IT ISN’T A SCAM…
AND NO YOU DON’T NEED TO SIGN UP FOR DIDDLY-SQUAT

Everyone is a critic

Tuesday, May 27th, 2008

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Oddly enough I sometimes get backlash comments for being too positive. As in Dr. Dan portrayed me as being super upbeat and not every cancer patient can be that way because they are “suffering”. I suffered. I suffer. But I also am careful to not let my spirit suffer along with my body. I have extreme physical pain in my sciatic nerve and shoulder. I have gross swelling of the left arm that is caused by my lymphedema. Throughout the last several months I have lost nearly all the muscle tone and strength in my dominant hand. Over the year I was on chemo I suffered like EVERYONE who endures chemo. That’s chemo. It makes you very sick. But here is the line. It is very often said as long as you have your health….You know this expression? We ll what happens when you don’t. What can you say then? I said “Fuck it. I have today. I might be sick. I might die. But I am going to enjoy every little thing until there is no more.”

Now this attitude stuns some people. Others are right there with me. I have heard criticisms because I say things about what cancer has taught me. As if I am saying I am a sage now. Which I most certainly am not. I had a lot to learn about life. And what it means to be self less and forgiving. Those things I learned from being a mom and being married to an alcoholic. I learned a lot of lessons from going back to school. I learned lessons from my close friends who were willing to tell me hard truths. And I learned a lot about love, marriage, and partnership from Kelly who frequently had to remind me that he was “on my side”. But I didn’t have a blog while I was learning those lessons. I didn’t have a forum for those epiphanies. I have one now. With cancer. And for now I am talking about those lessons. I am living a life based on acceptance. Whether you are an atheist or a zealot I don’t care. We all must accept that our lives follow a random and chaotic course designed to enlighten us. Dealing with that simple truth makes everything a lot easier.

I do not think I am smarter or more enlightened than others. Nor am I happy all the time. Although I am rarely depressed. But I was rarely depressed before my diagnosis. I am just me. I am just finding my way through a sea of medical treatments and bad news. But I am also resting on the peace of the Lord. I am resting in the arms of close friends and loved ones. I am learning about life from the fact that I am dying. But we are all dying. It is in fact the only thing we can count on in life.And I am not dying today. Today I am sore tired and weak. But I have NOTHING to complain about. So I will likely smile and laugh quite a bit today. So sue me.

Folkin Around

Monday, May 26th, 2008

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Throughout the last year it has been necessary for my friends to throw a few fund raisers for our family. The on going one seems to be the need for childcare expenses which eat up a lot of our income. Because I am too weak, have appointments, or am sick I need an extra set of hands. My friend Shayna Riddle is in charge of that. She is also walking in the Susan G Komen 3 day walk event in my name again this year. Last year many of her sponsors came from blog readers. Which is awesome. Shayna is having a music night at her house with up and coming folk artist Nicole Reynolds. The event will go half and half to help my babysitting fund and Shayna’s sponsorship for her walk which benefits all women with breast cancer. If you can make it out or would like to help all the information is here. God bless you all.

Hey! Save the date!
Sunday june 8
7:00 pm or 3:00 pm

We are hosting ‘Folk music for a Cure’- an evening of music and fun and art.
Featuring singer songwriter and XPN favorite, Nicole Reynolds.

I’ll send a flier and more information when I have it but I wanted to let you know so you can mark it on your calendars.

The suggested donation is $20.00- and every cent goes to benefit the child care fund for Andrea Collins-Smith(cancer warrior) and the 60 mile walk for breast cancer that Erin and Shayna are going to attempt!

To buy tickets in advance, just email me at chana613@hotmail.com

For more info on the cause see the web site below. http://08.the3day.org/site/TR/Walk/SanFranciscoBayAreaEvent

www.nicolereynoldsmusic.com

Call for directions or more info. 609-458-3462

Shayna’s House
17 Willis Ave
Cherry Hill, NJ

Dr. Dan Gottlieb interview

Monday, May 26th, 2008

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Dr. Dan has now interviewed me three times. Which I think is funny. I never really thought the cancer stuff was all that interesting to “outsiders”. But anyway here I am again. He made 2 mistakes…I was 37 at diagnosis. And I loathe sea gulls. Other than that it is spot on. I hope you like it. I love Dan. He is a dear friend.

Inside Out: Dark news cannot dim her brilliant smile

By Dan Gottlieb

Inquirer Columnist
I first met Andrea Collins Smith in August when she was a guest on my radio show. This 36-year-old, married mother of six had tattoos up and down both arms, sparkling eyes, and the happiest smile I have ever seen. She also had a turban on her head, part of the uniform of a woman taking chemotherapy.

Three months earlier, Andrea had received her bachelor’s degree from Temple University. The next day, she went to see her doctor because she thought she had an infection on her breast. After several tests, she was diagnosed with stage four inflammatory breast cancer. This rare and aggressive form tends to be diagnosed in younger women such as Andrea. And the prognosis is grim.

She began a blog (www.punkrockmommy.org), to chronicle her illness. In her opening entry, she told about how the cancer had spread throughout her body. She will be on chemotherapy for the rest of her life, and there was no hope for remission, just a chance to prolong her life.

It was the eyes and the smile that got me. There she was filling the room with joy as she talked about life and death, her bilateral mastectomy, and her hysterectomy. She said that death sits with her on the sofa, “but today, it said I was OK. I could have today.”

At the end of the show, we embraced as I thought “I’ll never see this woman again.”

But I did. Six months later she was a guest on my television special. Although her condition had not improved, she was able to delight in being alive without fighting against death. Somehow, she seemed even more vibrant.

And then last month I got the call I was expecting. Her condition had begun to rapidly deteriorate. And so her support system had mobilized. They had to find a way to care for her and her family now and over the long term. Plans had to be made for food, child care, and the children’s education and welfare. Andrea didn’t have the strength to be fully involved in these decisions.

So when I spoke with her last week, her voice was weaker, yet she seemed even more delighted to be alive. She said that, in a strange way, she felt herself healing and being more open to her life. “It seems every time they examine me, they find more cancer. But instead of telling myself ‘Oh no, the end is coming’ or ‘Maybe the next one will be better,’ I am simply open to what is happening and enjoying each moment.”

Enjoying? “Hell yes. My friend just took my children and me to Ocean City for the day. I was sitting on the beach, feelings the sun on my face and watching my children when I turned to my daughter Bailey and said, ‘Honey, this is the best day of my whole life.’ “

She went on to explain that everything she loved dearly – her husband, her children, the ocean and the sea gulls – were with her at that moment. How could she not be happy, she wondered. “I seem to enjoy everything now, a good meal, a smile on my child’s face, sunshine or rain – everything brings me happiness.”

Andrea has no hope. She said hope was about expecting something from the universe and people rarely get what they want. Instead, they get what they get. “Ultimately, we need to be open to whatever happens to us and believe that is what we are supposed to have.”

She laughed often throughout the interview. And when I commented on that, she told me she had nothing to be unhappy about. “Not only am I blessed with so much beauty in my life, I have deep faith that gives me peace with the person I’ve become and the life I have.”

When I asked whether she had any further thoughts to share with those reading this column, she thought for a minute and said: “Don’t ever allow your circumstances or your situation to dictate your happiness.” And then she laughed.

“InsideOut” appears every other week. Family therapist Dan Gottlieb’s “Voices in the Family” airs Mondays at noon on WHYY-FM (90.9). On the Web: www.drdangottlieb.com.

Slo Ride

Sunday, May 25th, 2008

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So. We actually got our puppy. You know I am totally insane. A puppy just makes you feel like the world is a good place. Until it pees and poops all over the floor and it reminds you that the world is also sometimes crappy. Now all my limited energy and focus is divided between Clay and the new baby Slo. A boy. A 7lb. baby boy Slo. A perfect name for a Bassett hound I think. Last night he woke up every few hours and cried. I removed him from his crate, took him out to pee and held him until he fell back to sleep. At which time I replaced him in his crate.

This is exactly like having a newborn without the breastfeeding. But I think the fatigue is good for me. I am both annoyed and exhausted combined with elated. That’s parenthood right? I just started to think well maybe I will live and Kelly always wanted a puppy. I said No they are too much work. Now he’s here and my mind is not focused on cancer. It is just focused on all the things I need to do today. Or the things I am happy about today.

I am very happy that my children will soon be done school. I like summer. I like their company. I even like being bored and hot with them. I am thrilled to not be on chemo. It is amazing to me that this treatment seems to be working. I am still tired and sore but it is getting better. I am looking forward to the graduations. Alec from high school. The twins from 8th grade. They are all looking forward. Bailey is doing a week of horse back riding camp. A week of vacation bible school. Jesse might go to Scotland to be with his grandmother and aunt. Alec is finishing a physics class at CCP and working. The twins are going to hippie survival camp in Virginia, for a week or 2. But mostly they will be with me. And mostly we hang out with Lhianna and Clarence by the pool. This is going to be nice to not be on chemo. That’s my favorite part.

Dr. Dan Gottlieb does a column im the Monday Inquirer. While I was in Santa Fe he interviewed me. It will be in there tomorrow. I am looking forward to it…I think. He interviewed me when I was in a really good place. So who knows what it says. And I really did not know what was going to happen with the new treatment. So it was just pure joy based on nothing but the spirit of God.I was not/am not banking my happiness on my treatment working. I am really still here just doing the one day at a time. The kids are loving the puppy. We are just looking forward to moving. Oh yeah we are moving. Our friends Megan and David from Circle are moving to the New York area. They are letting us live in their house for the next couple years. It is a very big 5 bedroom 1 1/2 bathrooms. Its across from a nice park/playground. It is in South Philly close to everything. Bailey could walk to school. The twins and Jesse can take the subway, which is very fast. Alec will be at college. We are in love with this house and it is next door to my friend Abbie. It is right behind Alys. 1 block from Ruthie. And three blocks from Heidi. That’s a good start.We are moving August 25th. My plan is to not be there. I get so tired. I think that is good way to do it. I am not looking forward to the daunting task of packing up a home we have lived in for 4 years.But that is a story I can’t discuss. Too stressful.

Just for today I am a little sore and tired. Thanks to everyone who has cooked this week. Thanks to Toni and her family who are giving us refurbished laptops for the twins. And thanks to anyone who has voted for me for best of the blogs. There is one lady out there who is really serious about it. She scared me. You don’t have to vote..I’m good. I am doing this for my own peace of mind and yours. I love you all. I will be trying to do the puppy thing this week. Wish me luck.

Support (by Tucker)

Saturday, May 24th, 2008

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This is a poem of thanks
To all who give me support.
You help me progress through ranks.
You’re the jury of my court.

You help me make decisions
And reveal my many faults.
You unearth my collisions,
And you’ll fix them ‘til life halts.

This is the poem I promised to post.

Learning (by Tucker)

Saturday, May 24th, 2008

Slow as Slo is to learn,

To have a mom is love he learns.

To be her son is his wish.

To feed from her and not his dish.

Slow as Slo is to learn,

Desire to know the world he yearns.

They both wish for attention.

Lovestrong air holding them in suspension.

This is about Slo, our new Dog.

puppylove

Friday, May 23rd, 2008

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This is the actual picture of our new puppy..Slo.

I just walked in the bedroom to find Andrea and Clay curled up together sound asleep. I kissed my wife on the cheek and though she did not stir I think she knew I was there. Today I got the first good news that actually mattered in a long time. We are frequently blessed with good news and kind deeds. These blessings make life easier in the moment. In the moment is really the only place I can live knowing my wife is going to die of cancer and probably sooner than I want to think about. Every new chemo fails, every new scan shows growth, the wheelchair becomes a viable option in some situations, and I watch her go through weeks of chronic pain at a time and pain killers that make her tired. I have slowly shifted my prayers from “please heal my wife” to “thy will be done”. I have not allowed myself out of self preservation to have much hope of a long future together. My heart would break every time a report of new cancer came in. I have felt it important to not be an emotional wreck all the time so that I could be there for my wife and kids. So today Andrea told me that her doctor thinks that the new treatment she is receiving is working. I am elated and at the same time so scared of having my heart broken. Dare I dream of being able to share another year or two or….. together? On our wedding day I found great joy in the idea that we would grow old together. Once or twice since then I found myself wondering when she was going to calm down and let me back in the house, so we could get on with the business of growing old together (note to self, do not engage in serious arguments without your keys and a 10 spot in your pocket). Now I really just want be able to enjoy some of those things one might have saved for ones autumn years (as John Waters so eloquently puts it). More vacations, more laughter, more parenting together, and a puppy.

Andrea has recently expressed interest in a puppy. I sort of disregarded this because I have heard her say so many times how much work it is to train a puppy. Tonight it all came to a head as she spent hours looking at puppies on line and giggling like a schoolgirl she said “You know why I want a puppy.” A few minutes later I said that I was in fact not exactly sure why she wanted a puppy. She replied “because I feel like I’m going to live.” I think we’re getting a basset hound.