Archive for June, 2008

Reality check

Wednesday, June 18th, 2008

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I am not an optimist. Never have been. At times during this cancer journey I thought my cancer was retreating. A scan usually (always) proved me wrong. And regardless of prayer and hope or expectation I am looking at the cold hard truth of my situation. My cancer has spread to nearly all my organs. It is extensive through my spine and pelvis. The most daunting are the lymph nodes in my neck which now resemble tennis balls. They have grown into my jaw and face and cause me great discomfort at the base of my head.People who know little about “cancer” tell me I look good and will beat it or live a lot longer. Doctors do not. I do not. Actually, I am now in so much daily pain that I hope I do not linger for a long time. I love my husband ,children and friends ….I would love to be here forever for them…but not like this.

I say that knowing that when I returned from the hospital I had an evening of game playing with the kids and an array of close friends who came to visit in short bursts. I say that knowing I spent time cuddling with Kelly until late in the evening. I say that knowing I can no longer be alone in the house..ever again. Not even with the kids. My cancer in my neck is beginning to make deep breaths a challenge. Swallowing too. Hospice told Naomi and I that in these head and neck situations the tumors sometimes grow into the major arteries and will cause internal bleeding. I signed an advanced directive. I am going to try a couple more rounds of chemo for kicks I guess, and then if there is no improvement I will enter hospice “full time”. I am still happy. Everyone else is sad. I am just in pain. And I have tried almost everything they have folks. Except maybe crack…I heard crack is good.

No I am not an optimist. I am realist. And reality is just fine with me. Today is the day of my twins’ 8th grade graduation. They each have won several awards of academic merit. I know I will cry. In the fall both boys will attend St. Joesph’s Prepatory Academy (the Prep) on full scholarship. I am so totally proud of them. Afterwards we will go to lunch as we have always done at my old work, Tattooed Mom’s. A family tradition. It is a wonderful day. We also found out that our daughter Bailey was accepted to Penn Charter with a full scholarship. She will start there in the fall. Tomorrow is Alec’s high school graduation. He too has won academic merit awards. He will attend Rochester Institute of Technology in the fall. It is the #5 engineering school in the country, according to Alec. He will major in mechanical engineering with a biomedical option. I am so proud of all these achievements. Who needs optimism? My cancer motivated me to find safe places for my children. My realistic nature let me be honest with them, myself and others and ask for help. And it reminded me to stay in the moment and not worry about what might be around the corner. The future is a bogeyman to all you anxious types. I am a realist I only live for today the future is fine on its own.

My today is not perfect or cancer free.But is a good day nonetheless. I have no idea how many more I have, and that is fine too. I think the biggest fear at this stage is suffering. Physical pain kind of suffering. We all want to go out quick and painless, no? We shall see. I am no optimist though….but not an anxious type either…it will be as it is meant to be. Today is a fine day. I am here.

Full of it

Monday, June 16th, 2008

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Yes it is Monday night and I am still at University of Pennsylvania Hospital. I was feeling sick. Nausea and headache. So I didn’t go to the bathroom for 5 days and well had an impacted colon. Basically, I am full of “it”. I know all the jokes ha ha ha. All I can say is I am clean as a whistle. Actually, I still feel a little sick. The medicines I take are all pretty binding. So I need to take some extra meds to avoid that. It has been interesting couple of days. I realize that hospital life has become very easy for me. Easy with my roommate whom I helped take care of. Easy with medical staff who ask me an array of questions about my care. Easy to make jokes. Easy to share my desire to not be resuscitated. Easy to talk to Dr. Demichelle about what I have done to prepare for my death and my life…however long that may be. My new motto…don’t fight with reality, reality always wins. I just think it is better to deal with these things as they come and go from there. One day at a time.

If you ask me today I will tell you I am happy. Really happy. I made jokes all day. Smiling and teasing my roommate. Visiting all day with Leah. Jen came in the morning and brought me my ipod and a bagel. She came back later with Alec. Jenny Ball also stopped by to check on me. I am pretty sure they will release me tomorrow. My home is being managed by Naomi. She apparently set up a calendar for each one of my kids. It sounds efficient. See the show must go on. That’s my belief anyway. It will all go on and function without me. I have so much help. And I am so fortunate to have such loving and capable people around me. Right now I am laughing as I write this because Alec and Jen are visiting me. What a wonderful day.

My mottos have served me well. I shared some of them today. My happiness is not dictated by my situation. God is not Santa Clause. I am happy that some of my close friends have decided to come out to visit me. I think better now than later. I am trying to make the best of every day. Even these ones in the hospital.

Message of love

Sunday, June 15th, 2008

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I dropped Andrea off at the hospital today because she has not had a #2 in 4 days and is concerned. Her doctor is concerned as well because there is cancer both in her spine and in her bowels that may be the cause of this. I’m not writing this to alarm anyone. I’m just asking all of you to take a moment to pray for my wife. I’ll post more when I know. I have to work today at 4th st. body graphics. Pink and black nautical stars (my ongoing benefit for Andrea) make a great father’s day gift for the those man enough not to fear the pink. Happy fathers day Dad and Bill, if you are reading this and to all the fathers out there. A special thank you and fathers day greeting to Ratface My new parenting role model.

Love to all
Kelly

Don’t cry

Saturday, June 14th, 2008

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Today was the gratitude party for all my helpers. We had a perfect day in the backyard oasis at Robert and Jenni’s house. Somehow I was actually able to hang in and eat and drink and enjoy the sight of my beautiful family.My mom came by the house and told me she was too sad to come. That was heart breaking. I guess I just hate the thought of hurting her, and everyone. People get tears in their eyes and I am struck with guilt. How could I do this to so many? And I know that that is not what its about. Loss and pain are inevitable. I pray for a cure for cancer so others will be spared watching their loved ones mourn.

But I am not mourning. I am still living. I talked about my puppy with my friends. I talked about natural childbirth with Holly. I talked about the kids.And really I was just happy to be there and present for everyone. I missed a few faces. Dina I got your message. Cindy had the grad party for her daughter. Gina had to wok. Ruthie was away.Leah…I wish you had been there! I love my friends. Thank you all so so much for coming out. I had intended to make a speech of some kind but my fatigue left me well…..speechless.

I have no idea what train is coming around the corner. I am just trying to live in the moment. I am not really sad. It was hard to learn that without treatment I had only weeks to live. And with treatment possibly months. I felt like I was in a dream state. But this is no dream. Honestly, I am even more aware of every moment now. I feel pretty good most of the time. When I am tired I sleep. When I have energy I engage in whatever I am up for. I do not feel worried or anxious. What more could possibly happen? Actually, I just want to finish the love letters to my kids and friends. And the letter Tamara will read at my memorial. I am giving the children all me belongings. I am so lucky that I have the ability to find closure. That is a gift.

And I guess there is nothing I can do to prevent anyone from being sad. I wish there was. Just know that I am sad to be leaving but not sad because I am going to a place of comfort and peace. I love you all and hope that I get many more days to write about this saga. To share it with you. Please do not feel guilty if we haven’t seen each other recently…I know you love me…I love you too….life is busy for us all. I will do my best to see all of you.

Thanks again to everyone who has given so much of their time and love to my family during this past year. You are a gift!!!!

Lemons and more lemons

Friday, June 13th, 2008

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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
Kelly

The Gratitude Party

Thursday, June 12th, 2008

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We want to thank everyone who’s helped Andrea and the Family over the last year in so many different ways…

*you all helped so much you deserve a party!So please come and celebrate with us!

Where to go: 228 East Thompson St. Philly, PA 19125
Saturday, June 14th from 1-4.

*House is on the corner of Thompson and Crease, Entrance is around the Corner on Crease Street. Please come in the garden door, the white one.

Please pass this invitation on to any of Andrea’s friends, she’d love to see them!

Any ?’s (other than directions) call Naomi @ 434-409-6003 or email us @ punkrockmommyhelpers@hotmail.com

We have!! (Look this means do not bring this)
plastic wear
plates
napkins
cups
burgers
dogs
buns
shish kebab
ketchup and mustard

What we need!!! ( Bring something on this list..if you can. If you can’t than just show up)
*sliced onion and tomato and pickles ( on a tray)
* side dishes
*salad, not macaroni salad or potato from the deli that stuff is nasty
*fruit salad
*dessert. Good dessert not that ambrosia stuff
*appetizers yummy yummy
*chips and dip and guacamole
*veggie tray
*ice
*relish..we only need 2.
*we think bring your own beverage…bring water…we think we are afraid to run out

We will have a little baby pool, so bring a towel for your little one and a bathing suit

Gut feeling

Thursday, June 12th, 2008

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Ok so at this point there will be only alcohol at this party…not good. Because we have like 4 or 5 sober folk among us and I think it only fair to say they should be warned! No Lizz is going to bring me a drink the rest of you…food! We need salads and pasta. We need dessert. Dina, Not sure about peanut butter. But maybe you can change my mind. I am going to try to do bacon wrapped shrimp. Sound good. I am going to post the event details today.

On we go. Yesterday I got up at 3am and never went back to sleep. I was up for almost 24 hours actually as Clay was up until 10:30pm again! I drove Kelly to work. I had lunch here with my mom. I did mom stuff. The kids came home and we were all hot so we went to see a movie. Kung Fu Panda. Clay sat on Jesse’s lap and watched the entire thing. It was hysterical. We laughed through the whole movie. Really laughing. What fun. We just drank water so it only cost like $50. What is the deal with $10 movie tickets? Who cares, it was ice cold in there. And by the time it was over it was cooler outside.

Later when we were all together I sat the kids down and explained everything to them. All the treatment options. Status. Told them I would know more on Friday. I told them matter -of -factly. No drama. Just asked the kids to think about the reality of our situation. Asked them if they could handle another summer of me being sick on chemo? What if it doesn’t work and I “lose” that time being sick when I may have been well? We cried a little. But mostly we tried to step back and talk about the options on the table. Tuck and Bailey seemed to really want me to try chemo one last time. Asa did too but he said I should get scanned halfway through treatment and see if it is working. Jesse seemed on the fence. He and I lean toward some palliative radiation and then hospice. Kelly says baby trust your gut.

My gut. Big round gut that it is, has kept me out of trouble my entire life. I always knew when something wasn’t right. A gut feeling that I needed to leave a party. Or that someone was not who they appeared to be. A gut feeling that something was “wrong” with one of my kids. I love my gut, it has never steered me wrong. But now…no gut instinct. Not sure if I am scared to do chemo or scared to think I could improve or scared to waste my time being poisoned when I could be enjoying the last bit of health I have.

But I also have skin cancer growing across my chest as Angie had feared. Sorry Anna! And chemo could stop that. I have pain that grows daily in my back. And I have several huge lumps in my neck. I just wonder if chemo could reduce my discomfort…while at the same time making me too sick to get out of bed or care for my family. Yikes….I am spinning my wheels. When I was talking with the kids I told them one day at a time. I am here now. Really here. In the flesh. And to waste it being depressed is a shame. It is ok to be sad, or think this sucks, or cry but in the end it is still God’s plan for me and them. And I say to all of you….God is good all the time. This is still a happy ending regardless of how it ends. My happiness is not based on what is happening in my body. It comes from the joy of living in the moment and appreciating it. So be happy. I am.

Pragmatism

Wednesday, June 11th, 2008

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My oncologist called me at 8pm last night. She is in California at a conference. She is giving lectures on her recent studies. She had my report faxed to her hotel room. This is how good my doctor is. This is how much she loves me. I didn’t call her. She doesn’t read my blog. She called and said I didn’t want you to worry until Friday. She has my cell number with her. She calls me because I am on her mind. I love Angie and trust her completely.

So she tells me what she knows. It was not a complete scan. Some things were unconfirmed. She is certain that the cancer has spread up and down my spine. There are numerous lesions. Varied (in size) and extensive (a lot). I listened to her tell me that my last mugga scan was not great (meaning my heart might not be able to handle the drug adriamycin) but she still thought we should proceed. Or we could try some radiation to the neck and spine. It would relieve the pain in my back and the discomfort in my neck. (After the radiation burns heal and the radiation fatigue wears off?) …and I reminded her that I am actually in too much pain to lay still on a table. She said they would need to get my pain under control. I said with what a tranquilizer gun…have they been hiding the really good drugs from me? Seriously are there medications stronger than heroin and oxyicontin cause that is what I get.

Back to the adriamycin…gut instinct do you really think this could work I ask. She is hesitant and careful. I say let’s talk hospice. I am feeling pretty good being off chemo. What would my “life” look like if I didn’t do anything? How long would I have? Not spending all that time getting scanned…worrying about where it has spread. Having the energy to be here now. How long might I have. She was glad to hear me say hospice, but was not able to have that conversation with me over the phone. I agreed that we should talk more on Friday. She was glad I was being so pragmatic (she may have said realistic). So I think that I have a lot to talk to her about on Friday. Kelly and I together must make this decision. I had considered trying to do rexin g in Santa Monica. My disease is spreading too fast for that. It would take months to get out there and get on medical, find a place to live, etc. I think my time is best spent here.

I didn’t cry but Angie did (my oncologist). She was sad. I was I guess but I still feel like me. Like if this is the story of my life than at least it is a good read. I am here. Today is still today. And that is fine. We will no more on Friday. We will crunch numbers. I asked her about her gut feeling…she said she doubted chemo might work..but felt like it would be awful to not “try” it. She said that it is hard to know when to stop treating, when to stop trying everything. I don’t know that I want to be that sick for 6 months and then die anyway. I have always pretty much known when to say when. I have taken a few battles too far and it has taught me how to be realistic. This one is a little harder. This decision I am making with Kelly and I think even the kids. I feel like they are old enough to help me make the decision. If they pushed for chemo I would do it. I want to hear their opinions. They are so insightful.

I will keep you all updated as things happen. I am still planning on being at the pot luck picnic on Saturday. Can somebody please bring alcohol? I may need a nice cold “drink”.

No news is not good news

Tuesday, June 10th, 2008

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Today is Tuesday. I had hoped to hear something from my doctor today. Instead what I heard was a series of calls.Jen the nurse practitioner said they did get some results but she could not give them to me. Angie is away and the report is not ready. Then a call from Betsy the scheduler…. “you need to come in Friday at 9:30am and meet with Angie to review the reports from your scans, she won’t do anything over the phone.” How can that be good? More…she calls and says I need a mugga scan ( checks your heart) in case she wants to start you on adriamycin on Friday. I call her back and remind her that I had one about 6 weeks ago. More bad news. Betsy calls again and tells me Angie may want to redo the scans but they can give me no medication. They will break it up into several scans.

I am crying. But I am a mom. So I stop. And Gina and I take my boys to Best Buy. They bring all their gift cards. We get the wireless card for their computer. And ipods.We had enough for everyone to get ipods. We paid for everything with gift cards. I think this is hysterical. We get my favorite chick fil a nuggets.We are in Gina’s air conditioned car. We get back to the house and Jeeter (my ex) has successfully fixed all my circuit breakers. Our air conditioner can now run without shutting down the electricity in the house. We took the baby and Bailey to Target. I buy the boys and Kelly underwear and undershirts. I am a mom. This is relaxing to me. This is what I do. I am making sure they have the essentials. This is how I refocus my energy. No need to cry. Plenty of time for that later.

Bailey went to her Penn Charter test and said it was easy. So I am a mom. And I have no time to mourn a bad scan. Or a short life. Or anything else. I am here now and the kids need to be taken care of. And that’s what I do. I called Kelly and he choked back tears and repeatedly uttered I am sorry baby. He and I have a lot of talking to do. I don’t know what I want. I guess I want to know what is going on before I decide to spend six months doing more chemo. Don’t leave those keep fighting comments because I am. And I have had no response to any chemo. I have my doubts that I will respond to this one either. And I am not jumping to conclusions. Her scheduler already eluded to the fact she intends to put me on adriamycin. So that’s the only information I have until Friday morning. Kelly and I need to spend some time alone. If you are up to babysitting on Friday or Saturday night give me a call. We need to work through everything. I am thankful for your support and prayers.

I don’t like Mondays

Tuesday, June 10th, 2008

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Where do I begin. Monday started off normal enough. I woke up at 5am and took care of more poop before 7am than a zoo keeper. Anyway, it was hot I needed to take a shower. Kelly had to wake up and help.He is not a morning person. Or a 97 degrees person. He rose from his slumber with curses hurdled in my direction. Oh marriage…so sweet. He was quickly over it and settled into watching a movie with Clay. I showered and went to pilates. Everything there went well. It felt good to work out. I came home and Erin had taken Clayton to Target because it is air conditioned. They were gone long enough for me to change and wash my sweaty face and walk the puppy on the shady side of the house. When they returned I tried to get Clay to take a nap. It was taking forever when Erin appeared in the door. Sheena was here…shaking…a tire iron flew off the back of the truck in front of her on I95. It went through her passenger side window and covered her in glass. It was a miracle she did not lose control of the car. Or that windshield did not shatter completely or even that it did not harm her. Sheena got to my house and called triple A, her husband Don, and a cab for me. The cab was waiting when I came out of the bedroom. I was trying to process what had happened to Sheena before leaving for my scan. Life as a collision course we are all driving 90 miles an hour towards our death.

I had a 2pm appointment. I know everyone in the imaging center. They like me. And I still did not start until 4pm. After being accessed and taking my pain medicine, I waited and waited for them to be ready for me. I got in the tube and was instantly struck by pain. In my shoulder and sciatic nerve. I could not lay on the hard plastic tray without moving. I kept shifting. After 20 minutes I was beginning to weep. I stayed in for 5 more minutes and pushed the bell. I explained I was in pain. I could not do this. We tried altering things with towels to make me more comfortable. The pain grew worse. It was 4:45. I could not take any of my medication. It was a 2 hour study! “No, I will have to reschedule” I said. As I redressed I looked at myself in the mirror. The swollen node in the front of my neck looks bigger everyday. My pain grows more intense. What is going on? The cab driver, the intake girl Beth, and the Russian lady Irina( MRI tech) all said, “You’re going to be fine…you look good…don’t give up hope..” Beth and Irina remember me from other visits to HUP. How hard it is to say,”Actually I am not kicking cancer’s ass. I am not getting better. I have more cancer every time they scan me.” People want to hear good news. Seriously, the disappointment is hard to watch and hear. My plan as of now is to try to reschedule the MRI under some kind of anesthesia. People do it everyday. It is my only chance I think of doing it all the way through.

I came home to find that at 5:15 Clayton was sleeping (not good). Tamara bought us a brand new air conditioner (very good). And my kids were miserable from the heat. Megan had driven me home from the hospital so we sat around in the ac and I woke Clay from his nap before it got too late. Megan left to feed her sweaty kids.The older boys had “homework” to do. They opted to watch the puppy and I took my other four kids to Lhianna’s. They swam. Clarence grilled some meat we brought. I sat in a chair. Dazed,confused,conflicted and sore. I tried to focus my energy on Clay who was naked in my lap. Or Mahlon who is just a few weeks old. I watched my older kids splash in the pool. And as so frequently the case I found myself floating away from everything going on around me. A distinct feeling that I was not even there just floating around my own life. This started last year when I was diagnosed. The last time I had the sensation was at the the benefit for me at the Mexican Post. I felt like I was not even in the room. Is this a disorder?

In the late evening Clay fought sleep until after 11pm. So did the puppy who slept until 11pm. Kelly and Jesse took care of the puppy I slept in the air conditioning with Bailey,Clay,LeeLee (our lab) and eventually Kelly and the puppy. I think Kelly had a hard time getting to sleep. I am taking this opportunity while my night owls are still snoozing to catch you up. Bailey is at Penn Charter taking her test. I am going someplace air conditioned with Gina who says she can’t take the heat. I am going to try to not freak out as I go hurling toward death at 90 miles per hour.