Archive for July, 2007

Monday, July 23rd, 2007

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Amy called it a punk rock high school reunion. The benefit tonight at the M room went off without a hitch.Everywhere you looked there was someone you knew and loved. It was amazing and a bit overwhelming for me because I wanted to talk to and hug EVERYONE. I was so impressed by all the time and effort that people put into the planning of such a fun event. ( Becky, Rob, Jen,and Dave) And it could be the cranberry juice talking but you all are quite an attractive group. The bands were so good. I heard that Joey Jap and the Hot Wired Hearts did an amazing cover of I wanna be your dog. And the Purple Generals cover of Stairway to Heaven was super fun. People won some kick ass prizes. Thanks to North 3rd, Silk City, Sourpuss clothing, American Mortals Salon, The Bean Cafe, Tattooed Mom’s, Kim Montenegro,the Red Hook Cafe, Crash Bang Boom,Trinity Framing, and many others.I am really thankful to all of you for coming out and supporting my family during this time. We are so lucky to have such amazing folks in our life. I was really happy to get to spend some time with you all. The T shirts will still be for sale to anyone who is interested. Just send me an email with the quantity , size, and shipping address. They are $20 each. Please keep reading the blog and commenting. It makes me feel connected to you all even when we don’t see each other. I LOVE YOU ALL ! KISSES! Some of you may have had a few too many and maybe forgot all the promises you made to me about taking my kids places or taking me out for a few dates. I will be collecting on those soon. Have a great day! Andrea

P.S. For those of you who could not make it or were out of town you have another chance to have fun for a good cause. Our dear friend Amanda planned the Stay  Strong Live Wrong night next Saturday July 27th also at the M room on Girard Ave. I will get the list of bands at the next post. I know you are like, “another benefit?”.  Well, we did not organize them so people were not aware of the each others plans. I hope you can come out if you did not make it tonight. T shirts will be on sale there as well as prizes, drink specials, and music.

The walk of life

Saturday, July 21st, 2007

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A note from Shayna

Some of you may know that i am training to walk The 3day. This is a 60 mile walk for breast cancer. I am walking in Andrea’s honor and also in celebration that my mother has been cancer free for two years. ( yahoo! ) Breast cancer is a scary disease, its terrifying really, to me. Andrea is a tough chick- but for me it wakes me up at night. To be in the race I have to raise at least 2200 dollars and I am about 1/4 of the way there! If you can donate even 5 dollars please do- its such a good cause. You can give the money to Andrea, Kelly or me or go to my website- http://www.the3day.org/philadelphia07/shayna My faith is in God and also that research it coming along and making improvements and that one day we will look back on this mess and just shutter at the thought. So, I have started walking alot- I walk several miles most days. During some of the longest walks, my legs feel like they are going to fall of- but when I can get past that, the walks are a time for meditation for me. I try to concentrate positive feelings towards her, towards Andrea and her healing. It sounds wishful, and it might be. but I feel closer to her and closer to God THe walking has been good for me too- Yesterday, I was walking a 7 mile and I saw a really big turtle near Cooper River. He was like the size of a dinner plate! His foot was stuck in a hole and he needed a hand- Actually i used a stick because he was a little menacing as turtles go- I took his picture, named him Mr. Turtle, and was on my way. But the rather blatant analogy was not lost on me. We all need each other. Andrea needs us now. Someday sooner or later we will need someone else. We are not kingdoms unto ourselves. We are completely interconnected, utterly helpless alone- someone once said that we are an accumulation of the gifts others have given us. I think that is the truest thing I have ever heard. with love, Shayna

Poisoned Girl

Saturday, July 21st, 2007

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This round of chemo was a bit harder than the last two. It’s difficult to say whether it was because of the introduction of a new medication or the cumulative effect of treatment thus far. In either case, I was down and out for a full 10 days. I had an array of intense symptoms. Most of the time I actually was either too sick or too tired to really do anything. Quality of life.. what life. I knew going into this that chemo would not be easy. But its really kicking my butt.

The lupron sent me on an emotional roller coaster. When I wasn’t sleeping or disoriented, I was a raving lunatic. I felt like someone badly in need of a 12 step program. I hate to be this honest. I like acting like I am a f***ing warrior. Not true. I am a baby when I am sick. People say I am strong. No way. I think my friends and family are strong. I am resting on you. You keep up my spirits and help me with meals and childcare. Thanks to all of you I can get through this. I really know that there are days where I am being carried with your help. I love you all so much. Thanks for moving to Fishtown and bringing over rice cookers. Or returning things to Target or hanging out all day with Clayton. Or rearranging my kitchen cabinets. Or taking my dog to the vet. I am not strong. I am just blessed, which allows me to at times be very weak.
I got acupuncture today. And it really made a difference almost immediately. The clinic director at the Won Institute( Ed) gave me treatment today. First I got 12 needles in my back. Ed said that he waits for the area that is really raised to get really small. The points correlate with my organs. Liver, kidneys,heart,lungs etc. I started feeling better real soon after their placement. Then when that was done I got 6 in my ear which made me laugh uncontrollably. And several in my stomach which did not make me laugh. I felt a lot of emotional changes this time as opposed to physical. Which was really awesome. I knew I really felt better when my stomach started to growl and I actually became hungry. A feeling that I have not had in days. I left feeling really healed. It was wonderful to be able to eat lunch and dinner and not feel sick or exhausted. Thank you to everyone at the Won Institute. Especially Ed and Doreen. I am so lucky to have found you.

I am going to try really hard to enjoy tomorrow as much as I enjoyed today. I am going to try to forget how much time I lost and concentrate on all the good things that are to come. Saturday we are going to sit in Rittenhouse Square for awhile. Sunday is the benefit and I will get to see all my favorite people ( the ones that don’t live here). I have plans to spend time with a few of you next week. And I get to have a petscan and catcan on Wednesday! Oh goody. For those of you who are not familiar with these tests or my reactions to them check out an old entry called What you again? Or don’t and I will reuse all the same jokes. In case you are wondering, the tests are to assess how responsive my cancer is to my chemotherapy. I am praying for very responsive feel free to join in on that.

I hope to see you all Sunday. Thanks again to everyone who has put that together. All the great bands and people/businesses who donated gift certificates. And especially my lovely Becky Vomit. You are the best. Rock on! I know I will.

Love letter

Thursday, July 19th, 2007

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.

I
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love you.

Kelly

My great uncle Joe’s testicles…

Thursday, July 19th, 2007

I’ve been thinking about why I post to this site.

I don’t have cancer. I don’t live with Andrea and Kelly and the kids. And I’m not that different from many of Andrea’s other friends.

But, like Andrea, I really want to write about this experience. Kelly’s post made me realize this. He’s having a rough time, and I don’t really know how he does it. I’d be hard pressed if I had an eight month old. I’d be struggling if I were coparenting five kids that weren’t “mine”. I’d be out of my mind if someone I loved as much as Kelly loves Andrea were suffering and I couldn’t do anything about it. And he’s got all of this. I hope you know, Kelly, how much I love and respect you.

Andrea’s living with cancer, but we’re all having to make sense of what she’s going through and how it affects us.

Last week, when Jesse and Don and I were with Andrea at chemo, her “chemo buddy” Christine was there. There’s one thing that they were supporting each other with and it’s a story that I’ve been thinking about all week. It gets at the heart of why I feel the need to write.

They’ve both had the experience of people telling them things like, “I have a sister who had cancer and she beat it.” Or, “My neighbor’s wife had cancer real bad and these miracle drugs saved her.” Or, “My great uncle Joe’s testicles were the size of grapefruits from tumors. He’s all better now. He’s 105 and training for a triathalon.”

I said things like this to Andrea in the first few weeks. I was worried that she didn’t want to live and that it would impact her recovery. I was in denial and was trying to make things alright. But Andrea, like her buddy Christine, has the kind of cancer you don’t just recover from. Our best hope is that chemo and surgery and radiation and more chemo and more chemo and more chemo will help them to live the lives that they want to live for as long as possible. As Andrea has said, there’s no “remission” for this cancer, there’s only “no evidence of disease”. And it doesn’t help me live alongside Andrea if I’m not accepting this.

That’s a lot to deal with.

It’s made me think about survival versus living. We’ve focused so much – as a culture – on “cancer survivors” that maybe this is why we don’t see people going through chemo. Maybe this is why IBC isn’t discussed as often. We’re still forcing people who are living with cancer into closets. But Andrea has balls the size of Uncle Joe’s and won’t be pushed into a closet.

Like her, I don’t want to just survive this. Yeah, we’ll all get through it. But there’s so much more than that possible. We can live it. And, in the living, carve out some space for one another to figure this out. Carve out some space to support one another. Maybe even carve out some space to make the things that all of us real people go through normal.

This is why I write. It reminds me. And it empowers me. I hope it empowers you. Kurt Vonnegut once said that he wrote to let you know you’re not alone. Knowing his work, I think he also appreciated the company. I know I do, so, please, let’s not go through this alone.

I hope to see many of you this Sunday at the benefit. We need a celebration together. And what better thing to celebrate than Andrea living her life?

Hey good looking

Thursday, July 19th, 2007

I don’t know if you’re busy on Sunday. Maybe you have plans. But if you have a free moment I would really like to spend a little special time with you. A date perhaps. Just reminding you all that Sunday night at 6pm is the M Room fundraiser. We will be selling the eagle shirts and there will be 8 awesome bands! I know there are also several really cool prizes and raffles. I will try to be there from 5 to 7ish. I have to get home to the baby. And actually I have been feeling pretty sick so I will be praying for a good day. In any case please get a babysitter or schedule out of work whatever you need to get there..we really hope to see you…big boy.

New Photos – Hairloss

Tuesday, July 17th, 2007

New Photos Here

I still need to touch up this last batch, but I told Andrea I’d have them up…so here they are…

-Jon

Risk Factors

Tuesday, July 17th, 2007

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Sometimes when bad things happen we ask, why me? Or why did this happen. I never really did that with my cancer diagnosis. I went straight into acceptance. If you don’t believe me ask someone who spoke with me in the first hours and days. From time to time however I have looked at the breast cancer risk factor information on cancer websites. There are about a dozen or so factors that increase the likelihood of one having cancer. I have zero. Not one. I menstruated late, had children early, breastfed them, rarely used birth control ( hence the six kids), and I have no known female family members with breast cancer. It bugs me because I actually believed that all that breastfeeding was going to protect me from breast cancer. I thought I was immune.

It is also hard because it makes me realize that our lives are not predictable, neat, tidy, or controlled. In social psychology my professor once told us that as humans we crave order. And because of that we tend to categorize and compartmentalize everything. We want to predict weather, football games, and even our odds of getting cancer. But this has taught me more than anything that life is truly unpredictable. We can control what we eat, how we treat others, our faith, etc. But we can not control for a gene. A gene that signaled a flood gate of cancer cells to my lymph nodes and breast. I did not get cancer because I did not eat enough vegetables or whole grains or because I failed to drink orange juice or got too much sun. I did not get cancer because I ate meat. I got cancer even though I had no foreseeable risk factor. I have cancer because life is just so totally unpredictable and it was just my turn.

I do not want to say that anyone else should sit around and worry about these risk factors. In contrast I think you all should take a deep breath and say, “God only knows”. And you just go from there. I don’t worry about much anymore. Certainly nothing trivial. I just try to enjoy the disorder and chaos that life has to offer. I don’t spend my time trying to figure how long I will live or how long anyone else will either. It has become irrelevant in my attempt to just embrace the day and accept life’s unpredictability.

Fear and Loathing in Communication

Monday, July 16th, 2007

Es mejor vivir con miedo que no vivir por miedo

I listened to Voices in the Family today because Andrea was one of the guests, but the entire show spoke to me. Andrea was, of course, fabulous (you could hear her smile!), but the show was a perfect context for discussing this blog.

I’m lucky, in my daily life, to have the kind of communication that was the topic of today’s show. Therapy, my work, and being friends with Andrea (and so many people like her) have given me the willingness to work at the practice of trust and love. Practice and willingness are at the heart of hearing and telling our stories, of course, since, as “Dr. Dan” said, none of us knows what we’re doing.

Despite practice, I still sometimes fear and presume that “others” won’t understand. As one caller said, this kind of communication is not consistent with the society in which we live. We are afraid that others won’t be willing or able to hear what we have to say, so we don’t talk. What others have to say scares us, so we won’t listen. If we make jokes about death, people will freak. Our lived experience scares the bejeezus out of us, so we write “Ca” on medical charts.

Anthropologist Mary Douglass, though, reminds us to ask not only what kind of society we have, but what kind of society we want. We create the society we want when we practice living (despite our fears) with trust and love. We have the chance to create the kind of safety that is so important to communication. I am so grateful to Andrea and Jon for this blog, since it gives us such a chance.

When we are able to get past our fear and say what’s on our mind, we’re as blessed as the person who truly hears us. When we are able to let go of our ego and emotions long enough to hear what someone else is telling us, we bless one another in the same way. I am consistently “mutually blessed” by my experiences with others when I give them my trust and love. But this is so often one-on-one, and is rarely experienced in a larger setting. I get to do this in a classroom (and here). That Andrea and all of you are able and willing to do this here (and that Dr. Dan does this on the radio makes me very happy).

Don’t let fear and loathing get you down. And don’t go to Las Vegas and act a fool. Give people your trust and your love and some of them will come around. It’s better to live with fear than to not live because of fear.

This just in…

Sunday, July 15th, 2007

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I have been asked to participate in a WHYY radio broadcast tomorrow. (Monday July 16th) The show is called “Voices in the Family” on FM 90.9 and it will air between noon and one pm. The producers contacted me because they have been reading the blog and felt excerpts of it could be used on the air. They will be calling me at noon to discuss IBC? or my experience with cancer I am not sure. I have no idea how long or short my portion of the broadcast will be. They told me they would like to have me in studio for an hour at a later date. We’ll see. In any case if you have a chance to listen tomorrow that would be great. Hopefully, I will feel well enough to do a good job. Right now I feel like someone smacked me with a maillot. I will try to suck it up and sound positive. See you all soon. Andrea

* In case you want to hear the broadcast if you missed it. Or like me wanted to hear it again, here is the link http://www.whyy.org/podcast/voices20070716.mp3. I giggled way too much. Thanks to all of you who commented today. Jon O told me that as a result of the “Voices in the family” segment 300+ new people checked out the blog. Which boggles my mind since I have to force all my loved ones to read it. ( kidding)