Archive for October, 2007

Prayer from the desperate

Friday, October 19th, 2007

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I finished reading the comments from “Boo!”. All of which made me cry. I know it is a tough time and that it will pass. But I feel so absolutely desperate for God to heal me right now. I feel like I am begging the Father to stay with me. “Please God please heal me.” “Please let me live.” What is it about life-saving surgery that makes us feel we are about to die? In any case, desperate is how I feel. Desperate for this to be over. Desperate for God to heal my body and my soul. Desperate to be at peace with whatever happens. Desperate to feel His presence and comfort.

I know the Bible talks about us coming to God as a child. And this desperation makes me me feel like a child more so than usual. Mostly because like something out of a child’s reach this situation is beyond my control. I can not will myself healing or comfort right now. In fact, I cry so hard I shake. But like a very scared child God does provide me comfort. In prayer I am weak and go to the Father for everything.Because even the smallest things are so daunting that I pray for His assistance in doing them. I prayed for 10 minutes the other night for the physical and emotional strength to take a sponge bath without throwing up.

I am getting through this whether I like it or not. It is so hard to believe that I am. Given how sad it makes me to walk in this body. But here I am. I am grateful for all the comments that you make reminding me that I am loved and cared for…as if any of you will ever let me forget it! I wondered out loud today what I have ever really done for any of you that has made you love me and help me like this. Because honestly I can’t think of any good reason that you should all be doing so much for me. I am overwhelmed with the way I am loved. You are blessing me by all these acts of kindness and love and I do not even know why.

So I am crying my eyes out and it 3:30a.m. I am going to wash my face and pray myself to sleep. I am going to pray for all of you. And thank the Lord for being so faithful to me.

Boo!

Thursday, October 18th, 2007

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I hate breast cancer awareness month. I hate that women who find little pea size lumps think that they “survived” something horrible. That’s baby cancer. That’s the grim reaper saying “boo!” Death is my fricking constant companion. He is right hear talking in my ear. No “boo!” for me. I have full on conversations. Does anyone understand the difference between stage 1 and stage 4 cancer? Do people understand the difference between a 90% survival rate and a 30% survival rate. I have a 1% chance of living 10 years. 1%!!! That is not survival that is a miracle. Women need to be aware of IBC symptoms. Not just self exams.

I am home from the hospital. Everyone is being totally helpful and gracious. I have never been so depressed in my whole life. I am trying to take things minute by minute. The incision is very disturbing to me. And the sight of myself fills me with a hot sickness. I know all of this will subside in time…but for now it is just brutal.

Physically my recovery has been slower than for many women in my position. I needed a transfusion. Had a reaction to it and also got a secondary infection requiring antibiotics. My oncologist called yesterday. Dr. Demichele was warm and genuine in her concern for me. She told me the breast surgeon called my surgery the most extensive he had ever performed. That is a bit of a troubling statement. Its great that I had such a skilled surgeon. But it is not such a good thing that it was so difficult. There is concern about skin metastasis. We will not really know until the pathology reports how involved things are. I may need another surgery. More and more I realize that I just waited far to long to seek treatment for the pain in my breast.

So I do not feel like eating. Or talking. Or ever being seen in public again. Alys and Tamara are taking care of my drains. ( look it up if you don’t know what the drains are) The home care nurse started coming yesterday. The physical therapist comes today. So my physical needs are being addressed. Karen is doing an amazing job with Clay and the kids. And thanks to everyone who is bringing food and helped get this house ready for me post surgery. If I don’t pick up the phone it means I am not feeling good or busy with the drains. Otherwise I will answer.

I am sorry this is a pretty low time for me. I know you love me. I know I will get better. Right now that is going to take a lot of time. Thanks again. Andrea

A special room

Tuesday, October 16th, 2007

My mom has a new room. It actually used to be Alec’s room, well is Alec’s room. It is where she is going to sleep while she recovers from her operation. We painted the room a light  blue color. Heidi and Alys painted and Alec and I helped. Our friends Megan,Jenni and Rachel decorated the room very special. There are beautiful curtains. New brown and blue bedding. Giant pillows. And a nice new lamp. And a beautiful tapestry that covers the big hole that Alec punched in the wall. There are flowers that mommy brought home from the hospital. The new chair matches the desk and now the room is comfortable and pretty.

My mom was in bed when I got home. I got into bed with  her. I felt her chest. It felt hard and bony. My mom said we can sleep in the bed together. She gave me her secret stash of peanut m and m’s. And I told her that I watched Ugly Betty without her, she pretended to be mad. I promised I watch it again with her. I am incredibly glad mommy is home!!!!! The new room is awesome.

Update from the Hospital

Monday, October 15th, 2007

Hi Gang,

It’s Sheena. I just wanted to give everyone an update on what’s been going on with Andrea. It’s never fun to be in the hospital, but she’s making the best of it and keeping her spirits up. She’s had a really rough time, but I’m hopeful she’ll feel stronger tomorrow. Unfortunately, she will not be able to return home today as planned. Her blood count was very low, and so she needed a blood transfusion. Andrea was told she has rare blood with complicated antibodies, so it took the hospital twelve hours to get her the blood she needed. Her surgeon thought it best to keep her an extra night, but I feel confident we can bring her home tomorrow. She needs sleep, so I hope the doctors and nurses don’t wake her every two hours tonight. I know she appreaciates all of your thoughts and prayers. Keep sending them, as we need all the good vibes in the world when we go to her follow-up next week and get the pathology report. Lots of love to all.

My First Post

Saturday, October 13th, 2007

Dear Friends,

This is Sheena, and welcome to my first post. I am here to give you the official update about Andrea’s surgery today. Don and I arrived around 5:00 a.m. at Andrea and Kelly’s house, where I walked in to find a very beautiful and chipper Andrea at the computer, leaving a few words for all who read her blog. She really did look beautiful, and far too composed for any surgery patient, let alone a woman on her way to a mastectomy and ooferectomy. We chatted and laughed for a few minutes, woke Jesse and Bailey with our raised voices, and hung out. It all seemed so normal– me, Don, Kelly, Andrea and the kids hanging out, joking, giving each other a hard time. It could have been any day– but it was pitch black, 5:00 a.m., and the day of her life-changing procedure. We soon walked out the door and to the car, and started our short drive to the Hospital of the University of Pennsylvania (HUP).

The check-in was swift, and in a matter of minutes, we were waiting in the Ambulatory Procedure Unit for her name to be called, at which point she would walk down the long hall and behind the double doors into pre-op. It was like waiting for Rod Roddy to call your name to “Come on down” to be the next contestant on The Price is Right. Around 7:15 a.m., Andrea was summoned, and she was on her way through those scary doors. She had a wonderful nurse, Bruce, who kept things light. She met her very nice anesthesiologist. Both of her surgeons stopped by and told her it would all be fine. Slight bump– the plastic surgeon who was supposed to be closing her mastectomy was out of town. They were very reassuring and confident, though, and promised to get a replacement right away. Andrea was totally calm through all of this. I don’t think the rest of us were calm. The staff did not pull some random “plastics guy” from the corridors, but found her an excellent plastic surgeon to close the incision. His name was Dr. Chang, and although we never met, I know he is a wonderful man because he also works at CHOP. Anyone who performs plastic surgery on children has a calling and a careful, kind heart.

At about 7:45, we said goodbye to Andrea, and hustled to the Surgical Family Waiting Room. The room is huge, and there are giant plasma screens hung on the walls, that scroll the initials of your loved ones, and give you updates on where the surgeons are in the procedure. They begin with when the patient was brought into the OR, move to when the first incision was made, stay agonizingly still until it moves to when the patient leaves the OR, when they can receive visitors in revovery, and finally when they’ve been moved to their rooms. It’s like watching a stock ticker; watching last night’s scores scroll by; staring at the walls of screens at the airport to find out which gate you need to sprint to. A rotating OR nurse will also give you periodic updates, with details that a screen with times cannot give to you.

Here’s the news you’ve all been scrolling down to read. The mastectomy went very well. There were no surprises, no scary moments, just best case scenario. Dr. Czerneicki was very confident that he removed all of the cancer that he could see in her neck, breasts, and lymph nodes. We will not know if she has clean margins until our follow-up in 11 days, when we will get the pathology report. The plastics team said the closing “went beautifully.” Dr. Rubin also had great success. He was able to remove the ovaries and tubes laproscopically (sp?), and could not see any sign of cancer in any of the surrounding tissue. He, too, used the term “beautifully” to describe the appearance and removal of the organs. The Big Board told us that the first incision was made at 8:31 a.m., and she was pushed out of the OR roughly 7 hours later. I think, surgically speaking, today was a great success. I have not doubt in my mind that our Andrea was in the best hands possible.

They then moved her to recovery, where things got hairy. As predicted, Andrea woke up vomiting, in a great deal of pain. I did not see her in recovery, but from what I understand, it was brutal. Kelly and Naomi were by her side in recovery, trying everything they could, I am sure, to make it right. At about 8:30 p.m., she was moved to her room. A private room. Who’s the high roller at HUP? I was so happy to see her. To me, to borrow a word that has now become a theme, she looked beautiful. I would be kidding everyone if I made it seem like the worst was over. It is still not easy. She is in a great deal of pain. I cannot even begin to comment on the emotional aspect of all of this. She will have a rough night.

However, as annoying as this may sound, I am thankful for today. I am thrilled that she had the best surgeons not just in our area, but arguably in the country. I am thankful that they were able to remove all of the disease they could see. I am thankful that she got out of recovery, and into her private room and the loving arms of her family. I include myself and Don in that group, with the Great Kelly and the Fierce Naomi. I feel very strongly that as horrible as today was, it has brought Andrea one step closer to healing. I know that as each hour passes, she will feel better. I did not sleep last night, and so I must apologise for my spelling errors, and sign off until My Second Post. There was so much love in the Surgical Family Waiting Room. Thanks to Josh, Luke and Alys for being not just fun at mastecomies, but also wonderful, loving friends.

See you soon

Friday, October 12th, 2007

It is 5am. We leave for the hospital in a few minutes. My surgery is at like 8am. Thank you to everyone who reads this blog and supports me with love. My dear friend Sheena will be filling in for me while I am out of commission. Keep me in your thoughts and prayers. Love Andrea

Under the knife

Thursday, October 11th, 2007

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Here we go. We did the cast last night. It was a very messy undertaking. Totally worth it though. So now that the cast is done Kelly has to sand it, coat it with joint compound, sand it again, and then I think it will get coated in something else. I am really happy that we were able to do that before the surgery.
Today I am trying to squeeze in last minute important errands/visits. I am going shopping with Shayna to grab a few things to wear after surgery that might accommodate the drains. I wanted to do nothing but relax today and get centered. I do not think that is going to happen.

I feel pretty anxious. I think my kids do as well. Jesse is getting migraines, Alec is suffering from acid reflux, Bailey and the twins are either hiding in their rooms or engaged in arguments. I think this is a really hard time. I think maybe they miss the quiet times with just us. I think they miss me being healthy. I know they are afraid of losing me. But we do not talk much about these things. I try to…but a lot of the time they just can’t say a word. Maybe they fear if they open up all the sadness will just pour out. So they turn it into migraines and heartburn. Mine stress has taken the form of knots in my shoulders.

I was hoping to start this leg of my journey with a lot more peace and acceptance. Actually, I am stressed about money, my children, my post chemo body, my relationship with Kelly, my inability to attend church regularly since my diagnosis, and the stigma of having no breasts. I feel woefully unprepared for all this. People keep saying I am strong…I hate that. I am not strong. Yes, I understand and accept that I have cancer. I try to have grace about it and not wallow in self pity. But I feel so afraid of all this surgery stuff. I hate that feeling of waking up from the anesthesia and vomiting all over myself ( happens every time!) Mostly, I am just not at rest. I am sad and fearful just like most women in my position.

I do not know how many visitors I will be able to handle in the hospital. Maybe for short visits. No men. No children. Seriously. Please. I will be at University of Pennsylvania Friday through Monday ( I am not sure what time I will be discharged). I don’t know if I will be answering my phone. Kelly is working all weekend and Karen will be here with my kids. Feel free to call Kelly to check on me. Or the hospital. And please pray for me. And my family.

THESE BOOBS WERE MADE FOR WALKIN’

Tuesday, October 9th, 2007

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A note from Shayna about the 3 day Susan G. Komen foundation. If you donated money thank you so much. Andrea

Hey girl!

It is the morning after the walk and I just feel amazing. I want to come over and visit to tell you about it, but I wanted to get some things down in words. The word amazing keeps coming to mind. First of all, 2300 walkers walked 60 miles. Many did not make it over a thousand were bussed for some part of the walk. One of the girls I walked with got a stress fracture from just the pure stress of pounding your foot into the ground 100000 times. They had ambulances and vans all over and volunteer doctors every couple miles. Some of it was so hard. At times it was so difficult I would start to cry in sheer tiredness and for the pain in my legs and feet- like knives, I would walk until I could not feel anything below my calf and it was weirdly surreal. but I met people who walked under such difficult circumstances, I couldn’t feel to sorry for my self for too long. My friend Margie walked after finishing a year of treatment. I walked with a girl with no legs. She walked on too prosthetic legs and popped pills to stave off the pain. I walked with a man who had signed up with his wife but she died a few months ago. People wore shirts and signs that said “I miss my mom” There was a couple who held hands all sixty miles. THhere was a man who was 75. There was women wearing, “Bald is beautiful” shirts and showing off there bald heads from chemo and there friends who had shaved their heads in support. I met a girl who had lost her sister to IBS. and I met a survivor of IBS. She knew you from your support group. It was an amazing group of people with incredible stories, I told so many people about you because I am so proud of you.

Everywhere we walked, people honked their horns, people brought us food and water, Elementary schools lined up to cheer us. A garbage man shook my hand and thanked me for walking because his wife has breast cancer. A little boy told me he was proud of me and that his mommy had cancer. People stood in front of churches and handed us gifts. People cheered everywhere we walked. As we walked into the finish line crowds of people cheered. The walk raised over 6 million dollars for breast cancer research. I raised 2200 dollars and most of it came from people who I never met who have heard of you or read your blog or read about me from your blog.

The whole experience- It was just amazing. I know it was nothing like the daily battle you fight. and you don’t get cheered enough. but I did this in your honor. because I love you and you are awesome.

With great love,

shayna

Breast impressions

Sunday, October 7th, 2007

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I thought may be I would just clarify a few things. So when I was first diagnosed the Doctors told me that I had cancer in my left breast, under both arms, in the neck and clavicle on the left side, cancer in my abdomen, pelvis, sternum and rib. I was in awe of this. How would my cancer spread so fast? I was classified as stage 4 and told that my cancer was not curable. I often was told things that made me feel like doctors had given up before the fight even started and it angered me to no end. So here is the reality….

I still have cancer in my breast but it is being removed. The cancer in my neck is gone due to chemo. The cancer in my sternum is the size of a penny. It is not a tumor but rather a “hole”. It is treatable with radiation. There was cancer under both arms (typical with IBC) but it is much smaller and these diseased lymph nodes will be removed a long with my breasts in surgery.There is NO cancer anywhere else and there never was. And while I am ultimately overjoyed I have to say that it bothers me that I had to insist on more testing and disregard petscans because of the false positive rate. I am not a doctor. It just makes me wonder what happens to people who do not question the care they receive. I love my doctors. But I had an instinct that the diagnosis was off.

So now they seem optimistic. More than me. I am a bit too jaded for optimism. I know too many women who thought the fight was over and they were wrong. I do not want to be negative just prepared. I have a new battle of course. I am getting the bi lateral mastectomy on Friday. It is a 6 hour surgery. I can not imagine how I will feel when its over. I will be in the hospital until Monday. Then Kelly’s mom Karen will be here helping to take care of me for two weeks. After that I am mostly on my own. ( Not really though). I am sometimes saddened about this. But I decided to sort of commemorate the boobies by making a plaster cast of them. We will make at least one. Kelly thinks we should do several and auction them off. I plan on decorating mine with baby pictures of all six of my children. I have always said the boobs were mostly reminders of nursing the kids.So I thought well this would be a beautiful way to keep the mammaries alive.

This week is a bit busy as usual. Cleaning the house,doctor’s appointments,last minute visits and getting the rooms ready for Karen and I. One day at a time. So please keep me in your thoughts and prayers this week. If you want to visit me at H.U.P. please call first to make sure I am up for it. Thanks for everything. Andrea

Helping Hands

Sunday, October 7th, 2007

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I haven’t written in a few days. I feel like I have been super busy. Doing what I am not even sure. But I have been busy. I always think things are going to slow down, but actually they just seem to speed up. Last night was the boobie benefit at Revolution Bikes. It was so wonderful. Heather and Brian did an amazing job. As usual a few friends of mine showed up..but more people I didn’t know. It was a really sweet event. Great food and prizes. Rob, Ori, Tavi, and Bailey won some really cool stuff. I was very lucky that Bill the owner of Red Hook gave me an awesome piece of art that he won because he heard I liked it. Thanks again Bill. It was really great to see so many people come out and donate their time and money for a good cause.

There are three more events coming up in the near future as well. Amanda is throwing a halloween bash at the Ruba club on October 26th. Jenny Ball is having a save the ta ta’s Hellcat Girls burlesque show night possibly in November. And prayers and poinsettias is taking orders to help benefit our family. I will post more on that soon.

If you didn’t know it we have been without a car for quite some time. Clarence and Lhianna graciously loaned us a full size van to use in emergencies. We have given it a lot of thought and decided to join Philly car share. So why am I telling you this. Well it is free to join Philly car share and their are no monthly fees. However, if people join and say I referred them they will give me a $25 credit. So that goes into my account toward when I use the car. If a whole lot of you do that I will be able to drive for “free”. Its really easy. I also hoped that everyone might suggest a parking location at 2600 Sepviva Street. If a lot of people suggested it I could get one outside of my house. I think this would be really helpful because we would only pay to use the car and not pay for gas or insurance. And no car payments or repair payments. It is good for us since we do not use the car everyday.

So if you want to be social and come out to one of the upcoming events…great. If you want to buy a poinsettia for $20 I will get that information up soon. If you don’t mind joining Philly car share to help me out…awesome. If you pray for me, take me to appointments, make us meals, clean my house or just provide companionship thank you so so so much. We really could not get through this trying time without all the love and support. We know that we are truly blessed.

Thank you all. Andrea