No regrets

I have this amazing gift of flexibility now that I did not have before.  I can choose to have hair.  And not just "hair" but hair that looks salon-perfect. Or I can choose to wear a scarf on my head. Or a hat. Or a cut up T-shirt made to look like a turban.  Do I have a headpiece to match this outfit?  If not, I can just put my hair on in seconds.  I just have to glance in the mirror to make sure it is on straight.

Even better is that I can choose to have breasts or not.  Let me tell you, it is very nice not to have them when I am exercising!  (Or when I step on the scale for my weekly weigh-in!)  Do I feel like wearing a bra today?  It has been very easy getting used to the feeling of freedom that going bra-less provides.  It never bothered me before to wear one-it was just one of those things that you get used to as a woman.  But a few months without having to wear one makes a big difference.  I pointed out to my friends this week that I wasn't wearing my "boobs" that day before our power walk.  It was the first time they said they noticed I was flat. Maybe they were just being nice.  But people don't seem to notice the ironing board look that I sport most days. It could be that the hair/no hair/hat/scarf thing gets the most attention.

In any event, I am enjoying having choices in how I look.

As I thought about it, I realized that it gives me another reason I have no regrets about choosing a bilateral mastectomy rather than a single.  Then my choice would be "lopsided or not?"  I would feel uncomfortable going without a bra, so I would end up wearing the prosthetic most of the time. I know others have made different choices and that is fine.  We all have to live with our decisions and I'm DEFINITELY not knocking a woman who made a different one than me.  I'm just saying that I'm happy with my own personal choice.

Speaking of living with the consequences of mastectomy, there is an amazing exhibition in New York this year called The Scar Project. Its a series of large scale photographs of young women who have had the surgery. Some are in various phases of reconstruction. Some have had bilateral, others unilateral. There is even one woman who is pregnant after a bilateral mastectomy.  If I was in NYC, I would go in person.  But you can check it out online as well.    The website has this quote from the photographer:

"Although Jay began shooting The SCAR Project primarily as an awareness raising campaign he was not prepared for something much more immediate . . . and beautiful: “For these young women, having their portrait taken seems to represent their personal victory over this terrifying disease. It helps them reclaim their femininity, their sexuality, identity and power after having been robbed of such an important part of it. Through these simple pictures, they seem to gain some acceptance of what has happened to them and the strength to move forward with pride.”


It is brave for them to be photographed for public exhibition like this. I'm glad they did, so we call can see what this disease does to women.  Like the poster for the Exhibition says "Breast Cancer is Not a Pink Ribbon."  It's a good reminder this month of October.  It may be fun to sport pink ribbons and talk about mammograms during Breast Cancer Awareness Month.  But it definitely leaves a path of physical destruction in its wake.  Thank God that treatment has increased survival rates.  The scars will be there forever, though. Yes, breast cancer is not a pink ribbon. (I still will put one on my car, though!)

I don't know if I could pose like that, even for my own personal use.  I have thought of taking pictures at various stages of recovery, just to document.  But I haven't done it yet.  My scars still look like Frankenstein. It reminds me of being at ICAN conferences where women would photograph their cesarean scars. I never did.  I never wanted to.  I still don't like to touch that darn scar, even though I've come so far and grown so much since that day in 1999.  It is similar, but not exactly the same with my mastectomy scars. I can touch them-I massage Vitamin E oil into them daily.  It is an interesting thing for me to ponder, and I don't have answers right now.  Both scars deal directly with my femininity and womanhood. I didn't plan to write this-it just came out as I was typing.  Maybe I will blog more about it later when I have some answers.  Right now, the more I think about it, the more questions I ask myself.

The day has arrived, almost

It is the day before my surgery. I'm glad this day has finally arrived. I remember blogging about what an eternity 3 weeks was going to be. I some ways, it was. But I had to accept it and use the time as best I could.

So where is my head at today? It is hard to describe. It's a mixture of many things, some of which shouldn't really go together: anxiety/anxiousness; dread; relief; stoicism; sentimentalism...I could go on.

I did a few more "lasts" today. My last workout at the gym. I met my mom there and we did a good 90 minutes of cardio. Mom doesn't like to sweat, but we did today! I did some sprints on the treadmill that were awesome. I got to that point where it felt like I could run forever. But every footfall I couldn't help but think, "When will I be able to do this again?" We finished it off with about 20 minutes on the recumbent stationary bike. That was easy. I'm thinking that, along with walks, will be a way for me to ease into exercise again. I know I shouldn't push it, but it is going to be very difficult to go "cold turkey." Who knows? Maybe I'll be in such pain after the surgery that I won't notice?

There are still so many unknowns. That also is a hard thing. How long will I have to wait in pre-op tomorrow? I don't want to wait for hours in a hospital gown waiting for my turn. I check in at 9:00 am. I want to go in and get it over with. We aren't sure of how "bad" it is, although we know it is in at least one of the lymph nodes. That's bad. But is it in all of them? Will radiation be necessary after chemo? I just don't know. How much pain will I have after the surgery? Pam, the volunteer from the American Cancer Society, warned me that it would be painful to wipe after going to the bathroom. Lovely. Will I be able to sleep? Another warning was that its hard to lie flat on your back. And turning on my sides will be out of the question. I have a wedge pillow, and the ACS was going to be sending me more.

I'm trying to get loose ends wrapped up today. I'm doing as much laundry as I can. I'm changing the sheets on my bed so I come home to a clean bed. I need to pack for my overnight hospital stay. That is weird too. I'm just going to wear down what I plan to come home in. So button up shirts, here I come. Here's another strange thing: I won't need the bra I wear tomorrow again. I might as well toss it into the trash at the hospital. For that matter, I won't need any of my bras. When I do heal, I'll be getting mastectomy bras to put prosthetic "foobs" into.

My mother in law arrived from France last night. I am thankful to have her here. She told me this morning that she is basically at our service. She will take care of the kids, especially Jean-Marc. She also is an ironing maniac, so I've been saving Eric's shirts for her. She's actually standing behind me ironing them right now! It will be nice for Eric to have his mom here to talk with for him. He's had a hard time too. Sometimes I think partners of cancer patients need their own support groups so they don't burden the person with cancer with their issues. With the kids occupied, my mom can focus on helping me more.

We are going to order Fish House Vera Cruz for dinner tonight to take home. I was going to cook, but when she made the offer, I thought, why not? I want to have a good meal tonight because I probably won't be able to eat much tomorrow, even after surgery. Another unknown.

I've been getting many comforting messages on my Facebook page. Thank you all for your prayers and support. I also appreciate the help with meals. It helps to know there is one less factor in the equation to cover. It is a blessing.

My prayer requests today:

• That we all be able to sleep tonight. I've actually been getting about 6-7 hours each night for the past few nights. I think that is one thing that has helped me not to completely be a wreck. I saw a nurse friend today who just learned of my diagnosis. She told me that in her jargon, I seemed very well "psycho-socially adjusted" to my situation. That is the result of God's grace, not anything from me. I know there are so many out there praying for me, and sleep has been a big issue for me. Eric and our parents need their sleep tonight as well.
• That I would be able to get in quickly tomorrow without undue delay in pre-op.
• That the surgery go well. That nerve damage be minimal. There will be some permanent damage on the left side. I also pray that the surgeon does not need to remove any muscle. If there is cancer there, she will. But hopefully that won't be the case. Pray that the cancer is maintained in a small area.
• That my body tolerate the surgery well without complication. A friend of mine suggested I take the homeopathic remedy arnica montana 30x. I've been doing that for the past few day and am going to keep it up. She had a mastectomy 8 weeks ago and she said it helped keep the swelling down for her.
• That the kids not have too much fear and anxiety. Isabelle brought the surgery up today at lunch. She's been extra clingy. Pray that they feel the comfort that only the Lord can provide.

I don't know if I'll have time to post again before I go. If something comes to mind that I want recorded, I will. Otherwise, I'll post again on the other side.

Blessings to you all.

Someone who has been there

I got a call today from a volunteer from the American Cancer Society (ACS). They have a program that matches cancer patients up with survivors with similar situations for advice, counsel, and overall mentoring. I told ACS this morning that I would be interested in talking to someone, and I got a call the same day. Pretty efficient. (As a side note, the American Cancer Society has been amazing. A very worthy charity, they do a lot for cancer patients)

"Pam" was diagnosed at the age of 44. By all measures her cancer was "worse" than mine. She was a "triple negative." The bottom line of that is that it was a more aggressive cancer and not receptive to hormone treatment. Her grade and stage was 3. She had a bilateral mastectomy, which is what I'm mentally gearing up for on Thursday. It was nice to talk to someone else who had been there. I do have a good friend who went through this about a year and a half ago that has been very open with me. But I'm always on the lookout for more information and experiences.

Some useful advice Pam gave me:

• When I wake up, my chest will be flat or even concave. She advised me to wait a day or so to look at it in the mirror. Maybe put my hands up there to "feel" the flatness first. When I do venture a peek, have someone there with me.
• The fluid in the drains will start out red. There may even be "floaties" in it, tissue or other stuff like that. Don't freak out on it. Just measure it and dump.
• The drains will make it difficult to be comfortable. They are probably the worst part. In the hospital, prop my arms up on the sides with pillows. Speaking of pillows, ACS is going to be sending me 3 special pillows to help in my recovery.
• When the drains are removed, it may hurt. The tubes are going to be about 1-2 inches inside my body for several days, if not a week or two. There is the possibility that scar tissue may form around the tubes. When they yank it out, it could hurt. Judy, the nurse at Kaiser, suggested I take a pain pill before the appointment. I will definitely do that.
• Many people have never had cancer or been touched by cancer. So they will say "let me know if there is anything I can do." This is their way of trying to help. I need to let them. Rather than say everything is okay like you have been doing all your life, now is a time for you to come up with things that you need done. Even if its a ride for the kids, or having someone bring you a food you are craving. Get over being self-sufficient.

At one point in the conversation, she mentioned that she didn't know how "attached" I was to my breasts, but they are killing me. I shared with her that I am very aware of that, and wish they were gone already. That I don't even want to touch them. I have very similar feelings towards my cesarean scar, although those have faded with time. But I am repulsed by my breasts, especially the left one, to be sure. Yet, at the same time, I have flashes where the thought of surgery puts a panic in the pit of my stomach. It reminds me of feelings that I have had when pregnant. I'd be going along just fine, and then think about the looming challenge of childbirth and have a momentary freak-out to myself saying, "Oh my God....can I do this?" It is kind of like that, but worse. Because at least at the end of childbirth, you have a baby. At the end of this, I'll be scarred and mutilated with painful recovery and chemo to look forward to.

Pam has survived a stage 3 cancer that was more aggressive than mine. She has gone on to finish her education and live life. She said that there is light at the end of the tunnel. It's just that the tunnel takes turns at points where you can't see the light. In those places, you just have to get past it. She is sending me a bunch of stuff, pillows, bra stuffers, etc. from ACS. Nice! More freebies! She is going to call again on Wednesday night to see how I'm doing and answer any last minute questions I may have.

On another positive note, Eric gave me the go-ahead to get some help around the house. I've had two wonderful women here cleaning my house all day. It has been 7 hours so far! They are dusting blinds, doing windows, cleaning appliances...it is fantastic. They are going to be coming every other week for the foreseeable future. He doesn't want me exposed to bacteria and stuff once my immune system is down during chemo. That works for me, I've got to say. :-)

My prayer requests today:

• That I be able to sleep. I've actually slept 6-7 hours each night for the past few nights. But I know that is a gift from God and I'd like it to continue. Especially the night before surgery. I have to report to Kaiser at 9:00 a.m. on Thursday.
• That the cancer not grow anymore.
• That my family not be fearful. Eric had an episode today where he started crying in front of the kids saying that the thought of me not getting through this, "scared the hell out of him." We all have our weak moments. Everyone needs extra strength this week as we gear up for what is to come.

Decision made

I just got off the phone with my surgeon and told her that I wanted a bilateral mastectomy with a sentinel node biopsy on the right side. A sentinel node biopsy will sample a couple lymph nodes on the right side to make sure that there is no cancer there. The chances that there is any cancer there is VERY slim, since they don't "think" there is cancer on the right side. All of the lymph nodes on the left will come out, since we know there is cancer there.

As I mentioned in my earlier post, there were a lot of factors to consider. I also surveyed as many breast cancer patients and survivors as I could. I did not hear of anyone who had a bilateral mastectomy and regretted it. However, I did hear stories of women who had less invasive surgery and later did regret it. Either because they felt "lopsided" or because the cancer came back on the other side. It required them to either live with the issue (at best), or have more surgery to go back and remove the breast.

For me, a big part of the decision is peace of mind. I am a warrior. I am going to stand up and fight this invasion with overwhelming force. I'm taking away its battleground. Taking the rug right out from underneath it. Game over. (I hope). I'm 40 years old. I have a lot of years ahead of me that it could come back in. I don't want to always worry that it would come back. I now have a 95% risk reduction of developing it on the right side. If it comes back, I'll fight it again. But I want to do everything I can today to fight the definitive fight.

It is going to be very strange to lose body parts. I'm not sure how I'm going to feel about losing my breasts. I don't really have a choice for the left side, there are just too many tumors in there. For the reasons mentioned above, I want to deal with both at the same time. Its just going to be very strange to be so flat after 25+ years. And just dealing with the realities of surgery. The incisions, the drains, the pain, the recovery. The down time. That is going to be hard for me to be incapacitated.

They do give you prosthetics that will slip into a camisole. I've seen some survivors refer to them as "foobs." They the shoulders and balance. After you have recovered from surgery, you can get more sophisticated "foobies." Some are even waterproof! Who knew?

I don't know right now if I will choose reconstruction are not. There are lots of options there-some that even give you the added bonus of a tummy tuck. I'm not a candidate for immediate reconstruction. Depending on the size of the tumor, I may need radiation after chemo. I'm glad that isn't a decision that I need to make right now anyway.

The next step is to schedule surgery. I should be able to do that tomorrow. My surgeon told me that my case has the highest priority. The timing is all in God's hands. Of course, now that the decision is made, I want it to happen as soon as possible. Get that cancer the heck out of my body. God will work it out so that all of the balls that are up in the air, (Eric's trip, my menstrual cycle-I don't want to be having my period while recovering from surgery, my soon to be arriving nieces/nephews, kids' birthdays, etc.) will come down in exactly the right place.

Holding pattern...but looking good & feeling better

Today's big event was my "Look Good, Feeling Better" session. This is a program put on by a consortium of organizations to help women undergoing cancer treatment to "reduce the visible signs of treatment." For me, it was a way to prepare for what is to come.

I was the first to arrive and sat down at a "station" with a small mirror and some cotton balls. Other women came in and at first it was a small jolt to see women with scarves on their heads. Man...that's going to be me in a few months. But it was good to see that they were mobile, able to joke around a bit and enjoy the session. One woman was very quiet and looked very sad the whole time. She didn't talk much. I sat next to another younger woman who had a baseball cap on. When she took it off, there were just a few strands of hair that she had pulled back into a thin ponytail. At the end of the session, she put on a wig that she had purchased but wasn't wearing yet. It was a really cute inverted bob style. She looked great. I hope she felt better.

The session was led by 3 ladies, one an esthetitian, and one a beautician who specialized in custom hair pieces. They gave us each a big red bag full of makeup, and then we went on to put it all on. A big issue for chemo patients is infection. So there was a lot of talk about sanitation and keeping your cosmetics and tools clean. Another big topic was drawing eyebrows. I guess hair is hair, and it is apt to fall out with the rest of it. (On a side note...maybe I won't have to shave my legs for a looong time??) Anyway, another good part of the session was when they talked about head pieces. The beautician mentioned we could use a wig and basically cut it up and use it to make other custom pieces--sewing a fringe of bangs onto a hat, and so on. Maybe I can use the freebie wig I got last week for that?

We got to take the makeup kit home with us--probably valued between $250-$300. Nice!

In the end, the best part of it for me was being in a room with other women dealing with cancer. I overheard the name of my surgeon and asked about her. The woman across the table is also her patient and LOVED her. She also gave me the name of a good Kaiser plastic surgeon. (I don't know what I'm going to do about that, if anything). I mentioned the name of my oncologist and a third woman piped in saying that she worked for Kaiser and Dr. P has a very good reputation and that I was in good hands. Getting confirmation about my care providers was reassuring. They all raved about the chemo nurses in San Marcos.

I still haven't decided about the surgery, but I think I'm leaning towards bilateral. I haven't seen anyone who has regretted that decision. But I have heard of women who have regretted a single. That's not to say they don't exist.

I'm expecting to hear from my surgeon tomorrow so we can get the surgery scheduled. Her office did call this morning to let me know I wasn't forgotten. She was just in surgery today and wasn't able to call. That was a bit of a disappointment-I was hoping to have a surgery date by now. Our family's plans are all in a holding pattern until we get this surgery date on the calendar. Dr. P's office did call for an appointment on August 5th. So chemo should start shortly after that. Surgery for Jean-Marc's birthday, chemo for Isabelle's.

Not that eventful of a day, but some baby steps were made. I appreciate everyone's continued prayer on my behalf. I don't have any new ones today--yesterday's are still appropriate.

Single or Double??

I have a decision to make.

I've decided that what I know about the left breast means that it must go. No lumpectomy for me. There is just too much going on tumor wise on the left side for me to feel like we would be getting all the cancer with a lumpectomy. I'll also lose all my lymph nodes on the left side.

My decision now is....do I have the right breast taken off as well as a protective measure?

Things that weigh against a bilateral (double) mastectomy:

• The MRI did not show any irregular things going on in that side.
• More difficult recovery from surgery on both sides.
• Removal of healthy tissue...is that overkill? I've never been one for overuse of medical technology.
• The oncologist said there was a 1 in 20 chance of developing cancer on the right side. He thinks those are good odds. (I'm not so sure).
• With my history of breast cancer, I'll always be monitored very closely if I keep my right breast. Any cancer should be caught at a much earlier stage and not be as invasive as what I have now. (At least that is the theory).

Things that weigh in favor of a bilateral:

• My surgeon told me there would be a 95% chance that the there would never be cancer on that side with no breast. Less of a chance of re-occurrence is a big thing. I don't want to fight this battle again in the future. Is peace of mind is worth losing a breast?
• I wouldn't be "lopsided." Having one breast would mean I would have to always wear a prosthesis or look really lopsided.
• With reconstruction, if I chose it in the future, would probably be easier to achieve symmetry.
• I'm most likely done having children, so I don't need them for nursing babies. If chemo doesn't throw me into an early menopause, my oncologist suggested that may be something we force to decrease the chances of re-occurrence. My breasts have fulfilled their primary purpose, so to speak.

I've been soliciting the opinions of other women with breast cancer to see what factored into their decisions. Right now, the majority of women have chosen bilateral and do not regret it. A few had "clean" MRIs and the surgical pathology later showed funky cells on the "healthy" side. So MRI's aren't always the best indicator, apparently. There have been a few who chose one side and wish they had done both. There are also a few who are satisfied with their decision to just have one removed.

Like everyone has told me, it is a very personal decision. Right now, I think I'm leaning towards bilateral. That list of pros seems to outweigh the cons. I welcome other gentle opinions. In the end, its something that only I can decide. But if there is something that I haven't considered, I would love to know. I also need to pray about it more.

So...prayer requests:

1. As this post shows, I need clarity and wisdom in my decision making on whether to have a single or bilateral mastectomy.
2. That I could get a surgery date as soon as possible. The surgeon indicated it could take 2 weeks. I would love to have it earlier. It is freaky knowing that you've got cancerous tumors and cells dividing inside of your body. Or even possibly circulating through your blood stream. Jean-Marc's 2nd birthday is July 10th. I would like to be somewhat conscious of what is going on around me by then.
3. That while I wait for surgery, the cancer does not spread.
4. For my family. For strength for them to be able to handle what is ahead. Eric hasn't been sleeping well, and I think he is stressed out about picking up some of my slack with the kids and the house and keeping up on his work commitments. My parents also have a lot on their plates with Jared in Iraq, my sister and brother both expecting babies in the next week. The kids are also going to need to step up a bit around the house and pick up after themselves. I pray that they can do it without being hounded.

I should be able to get a surgery date tomorrow sometime. I'll post with an update then.

God bless you all!

Meeting Dr. P

I had my long awaited oncology consultation yesterday.

Eric went with me. Him being in the drug discovery field and knowing many researchers (including cancer specialists) has been a great blessing. He had several pages of notes on research that he had done to get ready for the meeting. I just wanted it to start. As I waited, I played with an app on my iPhone called "Bible Shaker." You choose a category, push a button, and then an appropriate verse pops up. So I chose the topic "Fear" and started pushing the button. There was one really cool one and for the life of me right now I can't find it or remember exactly what it said. But it did say "You will not die." Thank you Lord.

The door opened and Dr. P came in and sat down. He was a quiet man who sat hunched over on the stool and looked at us over the top of his glasses. As we had our conversation, he reminded me of some of the scientists that I've met that have worked with Eric in the past. Quiet, but smart.

Had the results from this week's MRI (an answer to prayer). The MRI showed 3 tumors on the left breast that were fairly close together. That explains the strange feel that it has--it seemed huge. Now I know that it is 3, not one big one. There was a suspicious area at 6 o'clock as well, which may or may not be cancerous. If I was interested in trying to save the breast, it would need to be biopsied. If it was cancerous, a lumpectomy would not be an option. I had already decided that a mastectomy would probably be the way to go, and this sealed it. I don't want to have another biopsy and wait another week for results.

We discussed whether to do chemo first or surgery first. Chemo first would tell us if my cancer was responsive to chemo--apparently not all are. When they do surgery first, they remove the known cancer and then blast you with chemo to kill any cancer cells that may be wandering in the system. They don't know for sure that they are, its kind of a prophylactic measure. If it was responsive to chemo, the tumors should shrink. Frankly, knowing that there was something suspicious in there that we couldn't even feel yet makes me want to just move ahead with surgery STAT.

I brought up the question of a bilateral mastectomy. He did not think it was necessary. There is no evidence of cancer on the right side and I've had the best diagnostic tests done. With my history, I will be monitored very closely for the rest of my life. If cancer does develop, it will be caught early...hopefully stage 0. But still. I want to fight this right now once and for all. Do it right the first time. Knock it out with overwhelming force. He said the chances of it moving to the right after treatment were like 1 in 20. He thoughout t hose were small odds. I don't know. It seems pretty high to me. There is also the question of symmetry. I'll be given a prosthetic breast to wear during treatment and until I do reconstruction. (If I do reconstruction). I wonder if I'll be lopsided if I only have a single? The wig lady earlier this week regretted not having both taken off for that exact reason. Any thoughts you fellow pink ribbon clubbers have out there would be welcome. I was awake for part of the night pondering this question.

There is also going to be the option of participating in a clinical trial. If I choose to participate, I would have to do the chemo down at Zion rather than in San Marcos. They would randomly assign me to one of three groups. Each group gets a different chemo cocktail. I want my experience to help others, but I'm not sure about the trial. I also want to be treated with what is known to work. There's time to decide.

He also did a breast exam. He checked the lymph nodes in my neck. All clear. Whew. He checked the left side and felt the tumors we already knew about.

Througout the exam, Eric was quizzing him on various drugs and trials. As he helped me sit up after the breast exam, they started chatting about Eric's line of work, various uses for drugs on different types of cancer. I'm standing there in a hospital gown, just wanting to get dressed, and these to science guys are yakking! It was funny in a way. They could definitely communicate on a different level that I could.

Is Dr. P "the one?" I suppose so. I'm not really that particular about his personality as long as he is a good doctor and knows what he is doing. On a personal level, he got warmer as we went through the meeting. I get a sense that he really knows his drugs. Eric quizzed him pretty good. He made me feel like I had a good prognosis, even though he won't know the extent of the cancer until after surgery. He referred to women with "much more advanced" breast cancer. Funny how knowing there are others out there worse off than you can be a comfort.

It looks like I'll start chemo in early August. I should have the surgery within 2 weeks. I'll find out more specifically on Monday. That is an area for prayer. I want this cancer cut out as soon as possible. 2 weeks will be an eternity. I also ask for more clarity as I decide between a bilateral or single mastectomy. Thank you all, once again for being prayer warriors on my behalf. It is working!