Hospital Stays for Mastectomies - Bill in Congress

There's a particular email message that has come across my inbox more than a few times. The first time I saw it was over a year ago, and I immediately signed the petition it was advocating, not knowing that in the not-too-distant future, it would be something that might have an impact on my life.

I'm sure you've seen it too:

Mastectomy Hospital Bill in Congress

If you know anyone who has had a mastectomy, you may know that there is a lot of discomfort and pain afterwards. Insurance companies are trying to make mastectomies an outpatient procedure. Let's give women the chance to recover properly in the hospital for 2 days after surgery.

Mastectomy Bill in Congress

It takes 2 seconds to do this and is very important...please take the time and do it really quick!

Breast Cancer Hospitalization Bill - Important legislation for all women.

Please send this to everyone in your address book. If there was ever a time when our voices and choices should be heard, this is one of those times. If you're receiving this, it's because I think you will take the 30 seconds to go to vote on this issue and send it on to others you know who will do the same.

There's a bill called the Breast Cancer Patient Protection Act which will require insurance companies to cover a minimum 48-hour hospital stay for patients undergoing a mastectomy. It's about eliminating the "drive-through mastectomy" where women are forced to go home just a! few hours after surgery, against the wishes of their doctor, still groggy from anesthesia and sometimes with drainage tubes still attached.

Lifetime Television has put this bill on their web page with a petition drive to show your support. Last year over half the House signed on.

PLEASE!! Sign the petition by clicking on the web site below. You need not give more than your name and zip code number.

http://www.lifetimetv.com/health/breast_mastectomy_pledge.html

While a petition is all well and good, I strongly urge you to contact your Representative directly (phone, fax, email or letter) if you'd like to see this bill passed. This lets your Representative know how his or her constituents feel on this particular issue so that he or she can argue for it on your behalf. If you are not sure who your representative is, click on this link and enter your zip code (+4).

As you may have read in a previous blog entry, this bill does directly impact me. Unfortunately, it's too late for me, but it doesn't have to be for other women. If it weren't for the implant expander that they are inserting the same day as my mastectomy, I would be sent home the same day as my surgery. As it is, I will be going home with the drainage bags... which I will have to care for myself. Isn't it enough that I'm basically having my breasts amputated? Do I actually have to nurse myself too? I was terrified when I learned that my surgery was planned as outpatient surgery. Much to my relief, they always keep you at least overnight when there is any kind of reconstruction involved... at least my doctor does.

I looked up the information on this bill. It was introduced into Congress in April 2005 by Sue Kelly, a New York Congresswoman. The last action taken on the bill was in October 2005 when introductory remarks were made.

Please, I urge you to contact your Representative and ask them to defend this bill.

Updated 8/2/06:
My friend Becky posted some additional information about this in the comments, but I wanted to make sure everyone sees it, so I'm adding it here:

If you wish to contact your representatives about this bill, it will probably help to refer to current bill, the "Breast Cancer Patient Protect Act of 2005". In the House this bill is H.R.1849, in the Senate it is S.910. Unfortunately, this bill has been introduced a number of times over the years and each time Congress has shunted it into committee and let it die. The best way to get the bill introduced onto the floor is to push your individual Congresspeople and Senators to do so.

Thanks, Becky!

They took away my bionic vein

I had my IV port taken out today.

It was amazingly easy. It's ironic that the part of surgery (minor outpatient surgery, anyway) that hurts the most is administering the anesthesia that keeps you from feeling pain.

I was a little nervous about having the catheter removed for a couple of reasons. First, it was really uncomfortable when they inserted it, and I was aware of it in my vein for about two weeks afterwards. I wasn't looking forward to the sensation of having it removed.

Secondly, I was also concerned about the blood clot that was in that vein somehow breaking loose when they removed the catheter. However, they told me that since I've been on the Lovenox (the blood thinner I self-inject daily), the risk of the blood clot actually adhering to the catheter (which is what would cause the clot to break free when the catheter was removed) was very, very low.

Turns out, I didn't have to worry about the discomfort either. After they numbed my arm and opened me up, I took a deep breath to relax. They thought I was experiencing discomfort and reassured me that the catheter was already out. I never even felt it. It was great. And, it instantly relaxed me because I had all these concerns about that process, and it was already over.

The funny thing is, it also helped me to relax a little about my upcoming surgery. I realized that I have all these concerns about it, but it'll be over before I even know it, and then I can move on to the next thing. That was kind of a cool, new perspective on the whole thing.

I had another really cool thing happen yesterday. One of the actors in my film is a hypnotherapist and, last night, he brought me three CDs for dealing with everything I'm going through. They are self-hypnosis CDs for:

• Setting goals (with my health)
• Reprogramming cancer
• Preparing for surgery

He also gave me a link to download one for pain management. I'm really excited about this because I have two friends that have recently started doing self-hypnosis. One of them is specifically doing it for pain management and has had tremendous results with it. Tuesday night, I was telling my therapist about it, and she suggested that I try to learn some techniques from them before my surgery. The very next night, low and behold, three self-hypnosis CDs land right in my lap.

Sometimes, I really love how the Universe works.

More on Mourning

I feel the need to clarify something, as I may have offended some... particularly those who have had a mastectomy and opted against reconstruction.

This weekend, I got an email from a friend of mine who, after reading my last blog entry, encouraged me to find images and artwork that show the beauty of women who have lost their breasts in spite of the loss. That made me realize that when I said, "And frankly, after surgery, they're ugly," in my previous entry, that it might not have been clear to what I was referring.

I'm not saying that not having breasts (or nipples) is ugly or makes the women who lost them somehow ugly. That's not at all what I meant. In fact, I know some of those women. They're not ugly, and when I look at them, I never even notice whether they have breasts or not. And, as my close friends will already know, I don't think a person's beauty can be defined only in physical terms.

What I was referring to in my last entry was waking up the day after surgery and seeing my breasts replaced by angry red incision scars. I saw the pictures, and it's not pretty. And that's what I'm going to see the first time I wake up after surgery. Yes, those scars will eventually fade, but I need to be able to cope with the ugliness too. And it's not about whether I have breasts or not, because I need to be able to cope with that same ugliness when I wake up after reconstruction surgery too. So, it's not about whether or not I have breasts or nipples. It's about feeling like your breasts were operated on by Dr. Frankenstein.

Note: I have a very good plastic surgeon and I completely trust his abilities. I'm not at all concerned about this for the long-term. As I said in my previous entry, this is about learning to live with the temporary side of this. It takes several months for the scars to begin to fade.

Mourning my loss and being able to deal with the change and the ugliness of the scars when I wake up from surgery is really important. In fact, it's not just important, it's critical. I need to be able to face this and accept it for what it is. And every single woman who's ever gone through this or ever will, regardless of the beauty they find and create later, had to or will have to face and accept the ugliness of it. It's part of the healing process. And, if you don't go through it, you can never find the beauty in it.

So, that's what my previous entry was about. It was about facing something difficult and exploring my emotions about it. In order for me to be able to come to terms with all of this, it is really important that I honor those emotions and give myself time to grieve this loss. So, I hope no one out there that has opted against reconstruction in this situation feels like I am calling her ugly for making that choice. Regardless of the choice you make, it's not an easy one, and I respect whatever choice any woman makes. However, I feel extremely confident, that no matter what choice each woman has made in this situation, she has shed her share of tears over the loss.

The Mourning After... and Before

Well, the mourning has begun... finally.

The first time I cried about any of this was before receiving my diagnosis. I had done enough research to be fairly positive about what I had and what the general prognosis was. And I cried.

The funny thing is, I didn't really cry again about it because I immediately saw my oncologist and started chemotherapy. Maybe it confused a lot of people that I wasn't more upset about it than I was. But, I felt pro-active, which made me feel powerful. It's hard to be sad when you feel that powerful.

Within a few weeks of starting the chemo, I saw improvements in my symptoms. That, in turn, led me to feel even better about everything I was doing. So, again, it was hard to be upset.

But, now the chemo is behind me and what faces me now is surgery. I have a new thing to deal with in surgery. I saw my plastic surgeon this morning for a pre-operative meeting. The purpose of that meeting was to go through everything I need to know about the surgery: what to expect, what steps I need to take prior to surgery, the risks of surgery, and what would happen after surgery.

As part of that, I asked to see pictures of what I would like like right after surgery and after the reconstruction was complete. I'll admit the post-surgery pictures are hard to take. As women, our breasts serve two purposes:

• Sexual
• Nourishment

After surgery there will be no breasts or nipples. On the left side, I will likely have a straight incision line across the middle of my chest. On the right side, I'll have something similar, but I'll also have a bit of a mound there where the expander will be placed. As the expander gets filled (to stretch out my skin), it may become misshapen. It's not intended to look like a real breast. It's just there to stretch out the skin to make room for the implant.

Seeing those pictures was really hard because I know that in a few short weeks, that's how I will look. Whether you look at it from the sexual side or the nourishment side, my breasts will not be able to serve either purpose. And frankly, after surgery, they're ugly. It may be temporary, but it's still something I have to face.

Generally, women have a hard time liking their bodies. Blame it on the media, blame it on fashion, blame it on celebrity, blame it on shallowness... whatever. It's something that is an intrinsic part of being a woman. We are inundated with images of "beauty" that contain standards that are nearly impossible to achieve or maintain. And we constantly compare ourselves, and since most women can't look like that, we find that we usually don't compare favorably.

The size, shape, color, perkiness, etc., of our breasts is definitely part of that self-analysis. So, it's hard knowing that I am going to lose my breasts and they are going to be replaced, at least temporarily, with something that fails miserably in the comparison. You may think that's shallow, but it's something I have to deal with nonetheless.

Please believe me that intellectually, I am grateful that all I will have lost through this process is my hair and my breasts, both temporarily. Technically, the breasts are a permanent loss with a fascimile replacement that will serve the sexual role without ever serving the nourishment role. That is also part of mourning, by the way. I would still like to have a child. If I am able to do that, I will not ever be able to feed them with my own milk. While a lot of women choose not do that anyway, it's not a choice I can make.

At first, I thought this need to replace my breasts was because I am single and I didn't want to deal with my self-consciousness at trying to start a relationship without breasts. But, as I'm facing this, I realize that it has nothing to do with whether or not you are in a relationship. It's something that every woman has to go through. Some choose reconstruction, some don't. Some get reconstruction of the breasts but don't bother with nipple reconstruction. It's a personal choice for each woman based on her own desires, needs, and comfort. But, every woman goes through the mourning process. Every woman has to deal with that, regardless of what she chooses.

So, I've begun mourning. I began mourning almost the second I laid eyes on those pictures, as that's when it became a reality for me. I didn't want to lose it in my doctor's office, so I managed to hold it at bay long enough to get out of there. I didn't shove it all the way down; I just held it at arm's length. I wanted to mourn. I wanted to feel that sadness, because I know that in feeling it, it helps me accept it. It helps me deal with and face what's to come, so that when it does happen, I'm better prepared. I managed to get out of my doctor's office, but I couldn't quite make it to my car. As I walked through the parking lot, the tears started streaming down my face. When I got in my car, I just sat there, crying, mourning, accepting.

I'm not done mourning, but I have to live my life in spite of it. So, I plan to give myself time each day to sit with it, feel it, accept it and mourn it. And that will make it possible for me to live the rest of my day with the positive outlook that I hold precious to me like a life preserver in the sea of my cancer.

I've got a date

Okay, I've got all the dates for all my upcoming stuff.

First of all, on July 27, I'll be having my IV port removed. If it's anything like having it put in, it'll be a simple procedure. I'm a little nervous about what will happen to the blood clot, but I spoke with the nurse at my doctor's office about it yesterday. She reassured me that it shouldn't be a problem. I will have to continue on the Lovenox until the clot finally goes away, but removing the IV port should help speed up that process.

My surgery is confirmed for August 3. I have to be at the hospital at 12:45. My surgery starts at 2:45 and should last approximately 2.5 hours. Cathy will be here and will have a call list for anyone that would like to be notified when I'm out of surgery. Please send me an email (or call me) and let me know if you want to be on the list.

The good news... I am being admitted overnight after the surgery. My oncologist thought that it would be an outpatient surgery, but my plastic surgeon's office tells me that anytime they do any kind of reconstruction (even just the implant expander), they keep you overnight. So, I feel much better about that. She told me that it would be at least an overnight stay. So, they'll see how I'm doing the next day and determine if I'm ready to go home. I'm just so relieved that they're not sending me home immediately after the surgery. That was really starting to concern me.

I also spoke with the company that handles our disability claims at work today. The way short-term (and long-term) disability works is that the first 5 days I'm out of the office, I have to take out of my paid-time-off. I have about 5 weeks (and have only taken a little over a week so far), so that works out well. Neither the first 5 days nor any other days off have to be all consecutive since it's all related to the same illness. This is really good news for me. That means that beginning sometime in April, the time I had to take off for chemo is all covered by disability... as is all the time I'm going to have to take off for surgery. That's also a huge relief to me.

Well, it looks like phase 2 is well underway. The cool thing about phase 2 is that in a few weeks, it'll be over. Phase 1 lasted for four months, but phase 2 will be done in a couple of weeks. Phase 3 (radiation) probably won't start until sometime in September. That will be a little longer... almost 2 months. But when that's done, the cancer should be gone. Phase 4 is more like an epilogue... the cancer will be gone, but I will still need to have my reconstructive surgery done. That won't happen until a few months after I've completed radiation. So, when all is said and done, I will have spent a year dealing with this. If that's all I ever to deal with related to this, then it's not much in the big picture.

Graduation Day!

Yesterday was my last day in chemo!! I even got a graduation certificate from the nurses. It was very cute.

It's so weird to know that I'm done with chemo. Even though it was only 8 sessions of chemo, it's been part of my life for the last four months. It feels fantastic to be done. And, the next thing is surgery. My surgery isn't scheduled yet, but I'm expecting it to be somewhere right around the beginning of August.

I met with my oncologist and my plastic surgeon this week, so I have a little more information about what's coing up next. About 4-6 weeks after surgery, I'll start radiation for about 7 weeks. And it looks like I'll be getting radiation every day (Monday through Friday). It won't require that I miss work as it won't take more than about an hour out of my day. I'll probably just go at the very end of the day so that, if I have any discomfort, I can just go home and rest afterwards. And, a few months after that ends, I'll get my reconstruction.

As for the surgery, it looks like it's going to be out-patient surgery. I expected an overnight stay, but it looks like that won't happen. In some ways, that's encouraging. It means that the procedure is simple enough that they are not concerned about complications. On the other hand, it feels like major surgery to me and it would be nice to have a little hospital time to deal with it before they send me home. Fortunately, I'll have a lot of friends and family around to help me deal with it.

It looks like I'm going to get my IV port removed before surgery, though. Though the Lovenox (the blood thinner I've been self-injecting) has improved the situation, I do still have the clot. And, it's pretty much going to require the removal of the IV port to get rid of it. So, I should be getting that out within the next couple of weeks. I'll keep you posted on that.

I know it's been a while since I've posted. (I've had three members of my family contact me in the last 24 hours just to make sure I'm okay since I hadn't posted in a while.) I am doing quite well. That's actually part of the reason I haven't posted. It seems like there hasn't been a lot lot post lately.

I've been really focused on the movie I'm making this summer, and it has really been a blessing. It's given me a place to focus my energy this summer. Most of the time, it's hard for me to forget for 5 minutes that I have cancer. But, when I'm on the movie set, cancer takes a back seat. I get to forget that I have it. Even if I'm not feeling all that well when I show up on set, by the time I leave, I feel great. The adrenaline starts pumping, the excitement takes over, and I forget that I'm feeling poorly.

Since the end of May, I've been spending at least twice a week on location filming. I also usually spend a couple more evenings during the week planning and preparing for each shoot. But, when I go in for my surgery, I'm going to have to take a couple of weeks off. However, filming is going to continue without me, so I'm really going to miss it. I'll probably only miss about 3 days of shooting, and I've scheduled small scenes for those dates so I don't miss much. But I'm definitely going to miss it and wish I was there. That will be the hardest part of my recovery, actually. Again, fortunately I'll have plenty of friends and family around to help me deal with it. :)