Hey everyone, there is gonna be a fundraiser for Clay’s childcare at Delicious Corsets (see flyer). The fundraiser is a Pie-Throw in the Face Booth. So have some fun chucking some Cream Pies
Archive for the ‘Kelly Blog-Post’ Category
Some times I feel like I’m waiting for Christmas. Only darker. My wife becomes more and more ready to take flight of this world every day. I want her pain to stop. I want everything she believes as a Christian to be true. I don’t want god to be Santa Clause as she likes to say, Just a divine being who keeps his promises. She has taught me much about living, loving and parenting. Many of you make make very uplifting comments when I write. Sometimes flattering, but I’m just a guy trying to do the right thing in the moment. Lord knows that was not always my story. I need to spend a moment to thank all of you for your support both in building my strength through your words and allowing me to take some time out with my family in this trying time. Many of you have never met my wife and love her because of the way she has invited you in to this current journey, some of you know her in real time and love her because of the beautiful energy that she radiates and her unique way of parenting. I have begun to write some Andrea stories that I intend to post after she passes so that all of you might know her a little better outside of this chapter of life. I hope to let you all see her through my eyes. I think I was in love when I saw her staring at me through that coffee shop window, have been ever since. I’ll post more when the time is right but for now we can keep learning from Andrea.
Once again thank you
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
Andrea asked me to blog for her while she slumbers. Perhaps she asked me because this is a tough one to write. As you all may know she had a partial MRI the other day and extensive CT scans done yesterday. So we went to her doctor appointment today with a lot of questions. She knew that her Doctor (Angie as we now comfortably call her) who we hove both grown to love and trust a lot, wanted to suggest adriamyacin (most likely misspelled). Andrea also wanted to ask what her time line might look like if she were to stop conventional treatment and go on hospice while maybe going on a raw diet and doing other more holistic things to try to stay alive longer. I knew that things were not good when Angie looked about to cry when she sat down to talk with us. She divulged a road map of new cancer including lungs, more in the liver, some in the kidney area, in the bowels, and more lesions in the spine. She explained how cancer cells replicate exponentially, as cells split a little cancer will grow slowly and a lot of cancer rapidly. She said she thought that although not 100 % effective that the previous chemo treatments probably slowed down the new growth in comparison to the wild fire that happened off chemo. Then we pressed further and asked the heavy, the Grand Daddy of all cliché’s, “So Doc give it to me straight… How long do I got?” We were totally unprepared for what came next. Weeks. Its ok if you are crying now. I am. I was then too, we both were. We went on to discus three or four potential scenarios, kidney failure, lungs filling up with fluid, etc. We talked about how they can keep comfortable while her body fails her. Weeks. We had discussed hospice thinking we would have maybe 6 or 9 months to wrap things up, but weeks is not an option, weeks fly right by while you blink. So back on chemo seems the only choice. If this super aggressive chemo can give her months instead of weeks, then so be it. It feels a little like a hail Mary pass. But we’ve all seen that one work once in a blue moon. I’m clinging to hope still, but hope is about sharing another summer together. It’s hard to realistically ask for much more. They did however find us the one and only hospice organization that will work with her while she’s on chemo. They start tomorrow. For those of you that don’t know,in the cancer world that is having your cake and eating it too and we are very grateful.
We came home to Ruthie (such a comforting friend to both of us). I woke clay from his nap and loved on him in a way that I some times forget to and always wonder why when I do. His smile and laughter lifts my spirit like little else. Andrea is always so wonderful with him. From here on out I need to start loving him for two. Naomi (whom I frequently refer to as the pied piper of children) took him for the day and then till tomorrow. Tamara arrived with soothing tea and kind words. We all hung out in the air conditioned bedroom and did what we could to help Andrea with her nausea. Her mom called and Andrea asked me to relay the news. That was maybe one of the hardest conversations I have ever had. I only hope that Donna (mom) was even comforted in the slightest by my words or by the fact that I love her daughter so much. I returned to the room wiping away tears and telling my wife that that was the hardest conversation I have ever had. She said that she thought it would be harder to tell people she was dead. I told her that I wasn’t going to say anything and when people asked how’s your wife that I would say fine, but she left me and ran of with some guy named Jesus. Funny or irreverent you make the call, but the girls all laughed. We laughed a lot this afternoon actually, thats just what good friends do when the chips are down. Later, we sat down with the kids and told them what we had found out. We all agreed to set our summer plans aside for as much relaxed quality time together as possible. Andrea told them that although the chemo (red death) would take its toll that when she is awake she want to spend a lot of quality one on one time with each of them. We cleared off my dresser and moved the tv into the nice air conditioned room knowing that this will be the place where it all happens for a while. Bailey and I went out and returned with Andrea’s favorite chemo food from chik fila for all. and of coarse we all had ice cold lemonade.
love to one and all
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.
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.
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
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
What ever happened to good old fashioned private cancer? Oh Yeah, folks died or survived miraculously and lived to tell about it (thus becoming public after the fact.) I have been thinking about this a lot lately as things like the the news interview about the wonderful things the breathing room has done for our family that we did today happen. Andrea is so wonderful at being herself, both cheerful and well spoken on camera. This is much further out of my comfort zone for me. I am not great at asking for help and not sure I’m all that good at at expressing the deep sense of gratitude I feel to all those who have done so many good deeds for my wife and family. I struggle sometimes with not being able to be everything all the time to this family that I love so much. To let go and trust God and others is humbling. My wife’s public cancer is humbling (not embarrassing). I fully support her choice to share this experience with the rest of the world as I understand the great importance of this, and I am willing to walk with her through this as much as I can.
Friends (both new and old) often ask me how I feel about all of this and for months I given some pretty trivialized and sometimes shallow answers. I am by nature a pretty private person and talk to who I feel I need to when I am ready, sometimes after having to sort though whatever depression, anger, or denial that I need to. Sometimes I feel an expectation that I am supposed to feel a certain way about my wife having cancer or say the “right things”. Sometimes I want to say none of your…. business how I feel. In reality I feel humbled. I fear not being everything that Andrea needs me to be. I often doubt my abilities as a good husband or provider. I often wish we had more marriage / communication skills under our belt as then maybe we could deal with the fears and issues we have around cancer and just life stuff in general without becoming so frustrated with each other and ourselves. I wish my wife having cancer could turn me into the perfect husband and am saddened when I realize that it can’t and I’m not. My wife will be getting a double mastectomy in a few weeks and I have to embrace the things that will stay the same. She will have the same beautiful eyes, the same soft skin and full lips, the same girlish playfulness, the same love for me and for the most part acceptance of who I am. When we are at ease with each other she will still complete me, just as when we are at odds with one an other it will still be painful and i will strive to see her smile again. Still I have to give myself permission to mourn the loss of that which I probably noticed before the eyes and the skin as if I remember correctly falling in love was not my only agenda back then.. and yet I did .. hard and fast at that. I pray that God will show me many new things to admire, and be attracted to in my wife and that I will be able to express this adoration in a way that makes her feel comforted and beautiful. Lastly I am scared of losing her to cancer (in life or death). I am scared of letting her down as seeing her in pain and not being able to fix it is so frustrating to me. This makes me not the ideal caretaker as I want to be able to make all her pain go away and when I can’t I end up not doing enough. So this is how I feel… frightened, inadequate, in love, proud, humbled, and often lucky. I am very much in love with Andrea… not so much cancer, public or private.
Andrea I love you in so many ways, best friend, lover, mother (not mine), wife, cribbage partner, and on occasion formidable opponent. I want to be able to enjoy every day we have together and I want that to be a lot of days. Your cancer and my changing role has been really difficult for me, however difficult does not mean its not worth while. Even the bad times are worth while.