Did I Miss The Explanation Class?

I ask this question in regards to being told what to expect with this tissue expander. I heard that there was some discomfort when it was filled. I heard that the chest muscle had to be expanded in order to take an implant later on. I heard that taking some Tylenol or Ibuprofen would help. I had no idea I would wake up from surgery in the type of pain I did. I can remember the nurse telling me to take a breath and relax while every muscle in my chest and back seemed to be causing me pain or be in a spasm at that moment. I had no idea I would hurt the way I do five days after surgery. I just don't remember any of my doctors explaining to me how this expander would affect my body.

At this point, I'm very sorry I decided to do reconstruction for a breast. I wish I hadn't been so vain to think I needed to look normal (whatever that is) in appearance. While looking down at my flat chest with steri-stripes over the incision/scar area is not pretty, maybe I would be feeling better and feel like I was healing if this damn expander was not there. And I'm scared. I don't know what to expect next. All I can do is pray that it'll get better. I just want some normalcy back in my life. It just seems like so much to ask . . .

I've done all this because I want to fight this cancer, I want to be cancer free. I won't know this until the pathology comes back from this last surgery. Dr. Nate cautioned me that they could not take all the skin away and with this cancer being to close to the skin, I might still have to go through radiation. If so, then this expander will probably have to come out. If that happens, I don't know that I'll have it put back in.

I know, I had hoped I'd have a better day today and could write something positive and encouraging for anyone reading my posts. Sorry, this is my reality right now. It will be better soon, I have to believe that.

As The Surgery Churns. . .

Today's episode opens with Cyndi laying in bed wondering what to expect with Wednesday's surgery. The thoughts race through her head, anxiety builds as a feeling in her stomach and she wonders if her life will ever seem normal. As the camera closes in on our star, we see the complexity of her problems by the expression on her

face. . .

It's been over 25 years since I followed a soap. I always thought soap operas were overly dramatic. They also spent a lot of time showing how messy each characters life had become. Since my breast cancer diagnosis, I feel like I'm staring in my own soap these days. Each surgery, each test, each new piece of information seems packed with emotions and questions. I find myself scouring the Internet for sites that explain my type of cancer (Adenoid Cystic Carcinoma). I read blogs written by other cancer patients to read how they've dealt with their diagnosis. I look at pictures of mastectomies to get an idea of what having this surgery will make my body look like, I look for pictures of breast reconstruction and the list goes on and on.

We end today's segment with the camera fading away from our star. From a distance we watch as she drinks her coffee and hits the send button on her computer to publish her post. Remember to return tomorrow to view another episode of "As The Surgery Churns. . ."

Dealing With Small Complications. . .

As I've mentioned in a few of my last posts, I've had trouble with fluid build up near my lymph node biopsy. On Tuesday, my doctor inserted a drain tube with the hopes of removing it by this past Friday. Unfortunately, I was still putting out about 75ccs from this area in a 24 hour period.

Another development I noticed Friday morning is a slight redness on my breast. The doctor was not quite sure if this was the start of infection or from the fluid that was building up in the area of where more breast tissue had been removed or what. A needle was inserted to remove some of the fluid for culturing. Due to the discomfort I started to feel, the doctor stopped. I'm on two antibiotics. Doctor is hoping to knock whatever might be there out. On Monday, I will see him again to see how the breast looks and hopefully remove my drain tube. I'm hoping this does not get any worse. Wednesday I'm suppose to have surgery and will not be able to if I have an infection. Yikes!

Despite all this going on, I have been working. I'm trying to get my portfolio in order for my backup manager before the surgery day.

I believe that the surgery centers and/or doctors should give more insight into Seroma so that anyone who starts to experience this has a better understanding of what is going on and what to do.

Another Trip to The Doctor

I went to see Dr Nate today after a long weekend with a swollen arm pit. When he saw the area, he said he needed to extract the extra fluid. So with the help of a needle and his sonogram machine I received relief at last! Hopefully I will not have to go in again, but Dr. Nate told me that this happens from time to time and I needed to contact him immediately if any redness developed. If redness does appear, it means no expander for me at mastectomy time (Ugh!).

I also asked my doctor more about the size of my cancer. He confirmed that the nipple area still showed cancer and he had taken out as much tissue as possible on that side. I have an area about the size of a golf ball missing from my breast. (Hmmmm, when the surgeon removed the tumor from my brain, he said it was the size of a golf ball. I think surgeons like to use that analogy) Anyway, I asked Dr. Nate if he was going to run any more tests to see if this cancer had spread to my lungs or liver or anywhere else. He asked if the oncologist had ordered any more testing for me, which he hadn't. Then Dr. Nate said that because cancer was not in my lymph nodes, it should not be anywhere else in my body. He felt it should be contained to the area it was found. At this point, he didn't want to run any further unnecessary tests on me. I'm not sure if I agree with his rationale but I'll let it sit for now.

After I was done at Dr. Nate's office, I walked down to the plastic surgeon's office and told them to schedule my surgery. Maybe tomorrow I'll get the exact date and time.

Oh by the way, I decided to go with an expander and then implant for my breast reconstruction.

A Visit To The Plastic Surgeon

I had the opportunity to meet with a plastic surgeon today to talk about breast reconstruction. Bob met me at the office and watched as I filled out the necessary paperwork and answered questions about any previous radiation, previous surgeries, previous health issues, etc. (For all the different doctors and tests I've gone to recently, I wish all their forms were the same and that I could have filled one out and handed everyone else a photocopy.)

I learned that I am a candidate for expander/implant surgery and any of the flap surgeries that use stomach tissue and fat to form a breast. We discussed the possible recovery times for the various procedures and any other surgeries/procedures that maybe necessary afterwards. Most of the information we spoke about, I had found on line yesterday at http://breastreconstruction.org/index.htm. Dr. PS said that he would not lift my other boob until after he saw how my new boob looked. He took some measurements and a picture and said to think about it and let his assistant know what I wanted to do. (I did manage to get him to smile when I told him that Barbie Doll and I would have something in common soon, a breast without a nipple.) As I spoke with his assistant, I asked if she could arrange for someone that has had each of the procedures to talk with me. She said yes, she would find a person that's had each procedure and have them call me. Wonder how long that will take?

My gut says to go with the tissue expander and then implant. While this procedure will require a few months of expansion, it sounds like less time to recover from the initial surgery and while not pain free, I should be able to function while they expand my chest muscle. Plus this surgery is available with AlloDerm which will help in covering the implant. I also think that this surgery may be less traumatic to my body than the other. (In all honesty, I really don't know. Cancer is traumatic as well as the things we have to do to rid our bodies of it.) For me, none of the reconstruction options sound like an easy road to go. I believe it just depends on my pain tolerance and how long I want to be down afterwards. In some ways I wish I could be comfortable with just having it removed and no reconstruction. A lot less trips to doctors. A lot less fuss.

While I do not have an exact date for surgery, if I make my decision in the next few days, it looks like I'll be able to have my surgery the end of February, beginning of March. I know that time will pass quickly but for right now, it seems like a long, long, way aways.

I wish everyone a good night's sleep. Hopefully I'll be able to get one too. Karen you are in my thoughts and prayers for your surgery tomorrow. Clear margins and negetive lymph nodes!

The Emotional Roller Coaster Ride of Cancer. . .

The last time I remember looking at my watch before my doctor called it was about 10:30a.m. I knew if there was news today, the call would be coming through at anytime now. Moments later, my cell phone rang. I felt a queasiness as I reached for it and looked at the phone number in the window. It was Dr. Nate. He asked if I was somewhere I could talk, I replied "yes." I felt my stomach fall to the floor when he told me that we hadn't gotten the results we wanted, four sides were still cancerous. He felt we needed to remove the breast. We went through the same questions as once before, did I want reconstructive surgery and if so I needed to meet with the plastic surgeon next. When the call ended, I put my head on my desk and began to cry. Even though two weeks ago I thought my breast should just be taken off, now I was crying because this was where I was headed.

So that's where I am today. I've gotten my news and I'm waiting for my doctor's office to call me to set up an appointment with the plastic surgeon. I have too many thoughts and too many emotions at this time to even begin to tell you how I feel or what I think. They are just all mumbled together. I know I still have decisions to make and they'll come as I gain and collect more information. The roller coaster ride has not come to an end, it just climbed a high point, plummeted, jerked back and forth a few times and is now moving sort of straight before going towards the next peak.

TO have a B(reast) OR NOT TO have a B(reast)? That is the Question.

I received the call I'd been waiting for from my surgeon today. The results were back from my MRI and it was not showing anything further to be concerned about. (The thought that MRIs don't always show everything they need to was running through the back of my mind.)

The next step. . . My doctor spoke about doing the surgery, re-section, where they go back into my breast to remove more tissue with the goal of getting clear margins. He also asked me if I'd given any more thought or research into what I wanted to do next. Here comes the tough part, which direction do I move in?

If you remember from my first post, I've actually been wondering if it would be better to completely remove the breast. I make that statement because these are the thoughts that have been running around in my head. . .

The tumor that was removed was near the nipple which doesn't leave much tissue left to be removed.

What happens if the tumor is bigger than they thought?

What if they can not get six clear margins? They'll be removing the breast anyway. (It's imparitive that I get clear margins.)

If I have to remove the breast anyway, I'll just have delayed the inevitable.

A few more "what if" questions, a few more "if they" questions and etc. etc. etc.

Here's one of the biggest decisions I'll make in my life about my life and I'm not sure I'm qualified to make it. I'm waiting to speak with my husband and bounce all the ideas and options off of him. (Saying them aloud makes everything a little more real to me.) I'm also checking with my coordinating support person (from the doctors office/hospital) to see who my oncologist might be and if they've had any experience with ACC of the breast. Maybe this person can add some insight based on the information we have so far.

Ok, it's time to occupy the mind with some other thoughts and activities. Till next time. . .

Dealing With Another Day

It's Wednesday morning and I will soon be leaving for work. I won't be there too long before I have to leave for my MRI.

I noticed Molly's latest post and she's welcoming another woman who has ACC. That saddens my heart. . .

Yesterday I spent a good portion of my time running searches for information, reading what I found, joining the "Rare Cancer" forum and reading other women's journey with ACC Breast Cancer. I came to a point where I could read no more. . . I found myself scared, worried, sad and confused.

So many of the women talk about a breast or both having pain for a while, going to the doctors only to be told to cut back on caffeine or having some tests run and the test finding nothing. I talk about this because my right breast (where I have cancer) has had shooting pains off and on for years. I too was told not to worry about it or it was because I consumed to much caffeine, etc. So I would try what was suggested and I just lived with it when it would happen. I got tired of the doctors looking at me like I was a hypochondriac. I accepted the explanation a woman gyenicologist gave me, "I can't explain why some women have these pains and some don't. All I can tell you is other women have these pains and there's nothing we can find that explains the cause." And the problem for me (and I believe other people with this diagnosis) is I ask myself what I could have done differently? Would it of made a difference if I pursued this, not done this, etc.? Could this have been found sooner? Were these pains a sign? Was it a coincidence? ? ? ?

Ok, I'll admit it, I'M SCARED! I don't want to be sick! I don't like this spot-light or focus on me! I don't like telling my family and friends my diagnosis and hearing the pain in their voice or expression on their face. I also don't like how I'm feeling sorry for myself!

Ok, that's where I am right now. Time to change the focus and deal with the day.

The First Post - Dealing With The Word "Cancer."

Yesterday morning, I received the news that I have Adenoid Cystic Carcinoma of the breast - CANCER. And hearing the "C" word was like getting hit in the stomach and having all the wind knocked out of me. I was thrown off guard and run over with emotion and thought!

Meeting with my surgeon to go over the diagnosis, next steps and treatment options helped me to digest the news more, but when I got home and ran searches on the Internet, every website that came up seemed to have the same information on this cancer as the next one. It appears to be a "rare" cancer that is usually slow growing. The other item I picked up on is that it doesn't seem to respond to chemo.

While at the meeting, I was given a prepared binder with my lab report and information regarding breast cancer. I also met a woman that will be my contact person/coordinating person with each doctor and I can reach whenever I have questions or just need to talk with someone. She seemed very nice and supportive and I have a feeling I will be contacting her as my questions arise or the panic takes over.

My next step is 12/31/08 at 10:00a.m. I will be going in for a MRI to see if the test will show any areas further out from where the tumor was found and removed. After that, more waiting for results and then more surgery.

Yesterday my thoughts were to just remove the breast, get it off me and get the cancer out of me. My surgeon and support coordinating person said that my thoughts and feeling were normal and that I might possibly feel different in a week or two. At this point, my surgeon wants to see what the MRI finds and then believes he will probably be going back into the breast to remove more tissue for biopsy and hopefully come back with clear margins. That is unless the MRI shows suspicious areas and then we will probably be talking mastectomy.

What I'm finding hard to deal with at this moment are all the thoughts and questions that pop-up. I try to write them down as they come or pray for God to help me with the panic I feel for the moment. One thing that I found helpful on the Internet was Molly's Blog http://mebrawley.blogspot.com/. She has been dealing with this same cancer and has shared her experience. Thank you Molly! I'm glad to hear that you are doing well at this point.

Ok, that's where I am this morning. Time to try and get some work done and deal with life beyond the cancer part. I hope to share later.