Archive for November, 2007

Cult of cancer

Monday, November 12th, 2007

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Today was a rough one. I wish I was stronger. Emotionally and physically I feel weak. I feel like one false move and that house of cards will come falling down. Like I am just seconds away from crying my eyes out. I have no stamina right now. I am just tired and sore. I wish that I could just “get over this”. But ever since the operation I feel like I have grown more and more upset by medical procedures. The smell of alcohol turns my stomach. I just have no tolerance to be poked and prodded anymore.

I had a 2pm appointment for radiation. After changing into the gown a woman named Mimi took me into the room.There were 2 male technicians in there and when I realized they were planning on staying I was overcome with grief. They can’t stay I told Mimi. I will not take off my clothes in front of them. They are not doctors or nurses..they are technicians. They never took any classes on ethics. I looked at those 20- something guys and said, “No way”. My own husband hasn’t seen my scar. They were shocked. Mimi stammered through an explanation. I didn’t care that half the staff was male. I will wait here all day for 2 women . They sent in another woman minutes later. Then the supervisor came in and launched into a litany about why I had to allow men in the room. I told her I would try. Try to what ? Get over the sick feeling I have when I am naked? Get over my tendency toward being modest/shy? I was crying before I got on the table.

And again I had to keep my arms up over my head for 2 hours while they drew all over with me with sharpie markers. It is painful to keep up my arms like that. And my neck had to be kept a certain way.Before I knew it tears were streaming down my face and running into my ears. I was desperate to put them down but was not allowed. All I could think was, “God please get me out of here”. My entire upper torso is marked up and tattooed( 13 more dots today). And then they took a picture of my chest looking like a college football play book. I was mortified. These are the things that wear me down. They get inside my psyche.The culture of sickness. Indoctrination into the cult of cancer. They want you to accept your treatment like a good girl. Don’t rock the boat. I just can’t always play along. Some of this really sucks.

These minute details about what these procedures are like may be boring for you. But as always I really talk about it to work through it myself..but also so that someone with a loved one with cancer might really understand what they experience. Although everyone is unique, some of this universal.

In the end I demanded a meeting with my radiation oncologist. They would only let me see the resident. I pressed him to discuss the possibility of throat burns. He felt that the way they were intending to radiate that area would spare it from pain. So there seems to be a good chance that radiation will not be so bad. I am scheduled to go every day at noon starting on Wednesday. I am not scared anymore. I am just tired. Tired of medical procedures and medicine and sharpie markers.

Hope chest

Saturday, November 10th, 2007

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A few days before my surgery I threw away/gave away all my bras. I had more than a few. In total I had amassed about 50 bras that ranged from quite sexy demi push up underwire devices to nursing bras with their quick access for a breastfeeding baby. They came in all colors. When I knew my surgery was imminent I scooped them up and threw them in bags. I would never need them again. I figured if I did ever decide to “buy” a pair I would need a special bra to hold the silicone girls in place. So the purging of my lingerie gave me an entire free drawer in my dresser. I don’t usually have a lot of space in my house for anything so this was a welcomed vacancy.

Shortly after coming home from the hospital I decided that I could do very little to help my family, but I could shop online for Christmas presents. And that is what I did. I shopped. Soon after these little packages started arriving from eBay, Amazon and Etsy. Little things I knew were perfect for the kids or Kelly. And I started to put them in the drawer. I filled up the empty space with hope and excitement for Christmas morning. When I open the drawer to put away one of my surprises I am filled with anticipation. And far more joy than I can ever recall having at the thought of putting on any of those sexy push up bras.

Today I also got rid of much of my nursing/revealing clothing. Wrap dresses that no longer “work” with my new frame. I gave away favorite pieces that I once felt confident in. As of late they look ridiculous. But again the purging felt hopeful in some way.Instead of clinging to the need to have breasts I am moving into a saddened place of acceptance. It is difficult. I miss them. And I do not think that this can be rectified by falsies worn in a special bra or a series of surgeries to “fix” me. I am a bit broken, but not because I am without breasts.

Some women are adamant that they get reconstruction and feel that without their breasts they are less of a woman. Personally, I do not feel that way. I am still a woman. Without boobs , ovaries, or hair I am still me and I am female. My breasts do not define me. Neither does my cancer. It may be what I talk about in this forum but it still does not encompass who I am. I am a lot of things.

My husband has said that his favorite thing about me was my boobs. He says this honestly and unapologetically. He is sad too. And I know that reconstructed breasts and silicone enhancement will not replace the breasts that he noticed when he met me. This is a path of acceptance that we are both walking. We are both moving along and trying to recover. But our relationship is also not defined by my breasts or lack thereof.

I really had never considered the importance of my breasts before this. I liked them well enough. They were very important for breastfeeding my children. I had no choice in the fact that they needed to be removed. It may be hard for you to imagine having a part of your body taken due to illness or how you might feel about your partner losing a part of their body but I assure you it is tough stuff. Sometimes writing is therapeutic. Sometimes it is uncomfortable. But ultimately my hope is that if women read this who are experiencing the same thing they may be comforted. And I hope that it gives my friends insight.

Peace, Andrea

My so-called life

Wednesday, November 7th, 2007

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My Health

I stopped writing for a while. With my arm tightly wrapped in compression garments typing was tough stuff. They are off at the moment so I am taking advantage of my freedom. Monday I went to radiation and they tattooed me. 6 little black dots all over my chest and neck. They are not sure yet if I will experience the pain from radiation. I did get my chest drained again. I will need to do it again on Friday as well. It just builds up with fluids really quickly. It kind of feels like a water bed. Lovely.

My drug habit

A few weeks ago I spent the weekend in a great deal of pain. The fluid building up in my chest made it really painful to move at all. And the dilaudid made me nauseous. I called the doctor on call and he said that I shouldn’t still be in pain. In the end he told me to go to the emergency room if I needed pain medicine. He treated me like a drug addict. On Monday the situation was resolved through my surgeon’s nurse Nancy. She was appalled that the on call doc would act that way. She switched my meds to vicodin. Which are pretty effective and don’t make me sick. I told this story to a friend and I said, “you know what, I have f***ing cancer! If I want to develop a prescription drug habit that’s nobody’s damn business! I think if I ask for a prescription for crack that should write it for me!”

My mind

I have been asked to do an on camera interview with Dr. Dan Gottlieb for public television. I have no idea when it will air. We will be filming the segment next Friday in the studio. It is interesting to me that they keep asking me back. I love Dan. He’s a wonderful man. I like that part. I guess I just think, why me? I am not sure that I really say anything profound here. It is a lot to process when you are faced with a major illness. Or anything big. I think its a lot to process when you have a child or get married. Although admittedly those are joyous events. Oddly enough I have recently experienced those as well. In fact in the last the last 3 years I have gotten married, had a baby, graduated from college, and was diagnosed with a terminal disease. That’s a lot to process. And I do not always step back from my situation and take a breath. I feel like I usually just keep moving forward. Onto the next thing. I am still trying to deal with the loss of my breasts and next week I begin radiation. There is not much time to contemplate the impact of some of this.

My ( not so) social life

I left the house today. My mom took me to run errands. I took off the crazy compression garments and put on a long sleeve shirt. I wore my wig with a hat over it. This kept me from doing that obsessive fussing I usually do when wearing the wig. I put on my make up and pretended to be normal. I smiled at people. It felt good to be out. But it also felt strange. I feel more comfortable at home. Or in the hospital or at a doctors appointment. I feel normal among the sick. While I was at the supermarket I spotted a woman who must have finished chemo recently. She had more hair than me. She was touching it and so was the friend she bumped into. I know that scenario. My friends stroke my head now to touch the soft growth. I saw her friends embrace her the way mine embrace me. “We are so happy you are alive!” That’s an incredible hug. Its so different from a “I haven’t seen you in a while” hug. So as I watched her talk to her friends I felt happy to know there was another cancer person there. Another person holding in a difficult truth and celebrating with friends the gratitude to just be alive.

I am grateful to be alive. There were days after the operation that I wished I wasn’t. Days in which there was so much pain I thought I was going to die. But I didn’t. I am still here. I thank God daily for what I have. I have a life. And a lovely family.Wonderful friends. I thank Him for my disfigured, mangled, cancer ridden body. I thank God that I am here to fight another day.

Radiation love

Sunday, November 4th, 2007

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Hi everyone. I am still typing with one hand and it sucks. I want to say thank you again to everyone who has prepared a meal. That has been a wonderful help to our family. And thank you to Shayna for the couch.And to Lhianna for helping me with Clayton. Thanks to everyone who has visited and called.Your support and prayers are priceless.

I am going to keep this sort of brief. Radiation begins next Monday and I do not think I will be up to driving myself there.I still take pain medication and have limited mobility.I tire easily too. At any rate I would like to know if there are people willing to drive me to radiation. It will be five days a week for 7-8 weeks at HUP in West Philly. I will try to make the appointments between 10 and 11 a.m. Lhianna thinks she can do Wednesdays. If anyone else thinks they can do one morning let me know. Radiation will begin the 12th. That first appointment will be longer than the ones after that. I think it should be sort of brief once I start on a daily basis. Give it some thought and let me know.

I am going to stop there. I am tired and sore. I love you all. Andrea

Update: All the days are filled and I put the schedule in the comments. If you can be an alternate please let me know. And thanks again to everyone who is so helpful to me. I really can not believe how amazing my friends are. I love you all.

The high cost of cancer

Friday, November 2nd, 2007

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This post when completed will have taken me hours. I am typing with my non-dominant hand, as my left one is wrapped up in layers of foam and bandages. The lymphedema specialists are trying to push the fluid out of my arm where it will hopefully get picked up by my working lymphatic system. This will take two weeks.I will only be able to shower every other day when the materials are changed. I am annoyed by this cumbersome appendage but grateful that something can be done. The swollen arm was giving me a great deal of pain.

Monday I will be back to see the radiation doctor’s office.They will be tattooing small blue dots all over the targeted area. Yeah more tattoos! Lucky me. After that I will go see the surgeon again to get drained. Then the specialist will come to my house and re-wrap my arm. So why am I telling you all this? Here’s why. I know that in America there is a health care crisis and most people are uninsured,but I am fortunate to have medical assistance through the state. My medical insurance provider has actually agreed to pay for everything that they have been charged with.

So let me break that down a bit. I have had ultrasounds,MRI’s, pet scans, ct scans, bone scans, and a mugga scan of my heart. These tests vary in cost. A pet scan can be up to $14,000 each. I have had 3. In total I estimate that this part of my treatment is close to $100,000.

My chemotherapy cost $20,000 each time I went. I had six rounds of chemo times $20,000 that is another $100,000. That did not include the charge to see the oncologist which is typically $500 per visit.So I saw her 8 times. That equals $4,000. Plus the cost of procrit (to raise my red blood cell count) at $1,000 per shot times 4 equals another $4,000. So total is $108,000 for chemo.

Then there are my prescriptions. I have paid no co-payments at all. I got emend 6 times. This was an anti-nausea medicine I took before and after chemo. 3 pills cost $414! I also got several prescriptions for pain medicines, 2 additional nausea medicines, steroids, anti- anxiety meds, and antibiotics. I now am on a very important medicine to keep my cancer at bay. It is called arimidex and it is $500 per month. It is without exaggeration that I estimate an additional $10,000 was charged to my insurance company thus far.

Of course then there is my surgery. I have never seen a bill for this. However, I have read from other women that their bi-lateral mastectomy cost $500,000 including hospital stay. That seems accurate. Mine may have been more. I had the top surgeon perform the operation. I had a plastic surgeon close, and I had an oophrectomy as well. I had a 5 day hospital stay in a private room. I required a blood transfusion. An x-ray and an ultrasound were ordered after my surgery due to complications. I received countless medications and tests while in the hospital. It is possible that $500,000 is a low estimate.

Since my release I have had home care nurse assistance. I have seen a physical therapist and an occupational therapist. As well as the lymphedema specialists. All of these people charge between $200 and $400 per visit. I have had at least a dozen. So let’s round out post-op care to $4,000.

I have seen the surgeon three times since I have been home. To remove the drains and drain fluids from my chest. Each of these visits cost my insurance company about $800. I have seen the radiation oncologist three times as well. This is another expensive visit that cost about $500-$700 each. And I have also seen my oncologist. In total these post- op visits have cost about $3500.

So as of now,without the fee of daily radiation, I have been the recipient of approximately $725,000 worth of medical care!!! God Bless America. I am incredibly grateful that I am poor enough to get the best treatment in the world. I think when all is said and done I will be a million dollar baby. Literally.

I know there are a lot of socio- political arguments to be made here. Why does health care cost so much? Why are there so many uninsured people? I can not begin to answer those questions here. I really do not even know enough about it to make a sound argument. All I know is I went down to welfare 7 years ago and asked for medical assistance and they gave it to me. And thank God they did.