Well, not too often am I rendered silent.

You know it is hard for me to write when I am down, and these have been some difficult weeks.

I was so thankful to be able to contribute to the Breast Cancer Awareness efforts of Lancmoms.com. It got tough toward the end of the month, especially combined with the reconstructive procedure unexpectedly wedged into October. I have been struggling with splitting headaches--a leftover of the radiaiton treatment and I have been falling like a toddler learning to walk--it is crazy. I am gearing up for my first round of tattoos on December 2.

It knocked me back having to take time off from exercising again and dealing with pain and bandages, etc.. Exercise is such an integral part of how I manage my emotions, energy level and endorphins! Mentally and physically it has been a bummer.

But, if I was thinking of keeping to myself, last Tuesday changed all that. I have been fuming over the new guidelines to begin mammograms at 50 and to stop self breast exams. I am in absolute disbelief over this.

I will write more about this later this week, but I used my family connections tonight to make my voice heard. Michael had a meeting scheduled tonight with Francis Collins, decoder of the human genome and newly appointed Director of the National Institutes of Health (NIH). So, I was the greeting committee for Dr. Collins at the restaurant, as Michael met a colleague at Union Station in DC, to walk over to the restaurant.

I wanted just ten minutes with him.

I did give him a chance to sit down and then asked how many times he had been asked to comment about the changed guidelines for mammograms this week. He said about a thousand! I asked what his take was on it. (I am learning some self control!) He said he got wind of it two weeks ago and gave Health and Human Services the heads up that they better be prepared for a firestorm reaction. Wow, was he right.

I will leave you with the most important things that he said tonight and flesh the conversation out later. He said it is obviously not as black and white as the governemnt task force wants it to seem. (Face the Nation featured both sides of the debate this morning.) I said I thought it was ridiculous to add that women should not do self breast exams any longer! CRAZY! He agreed completely.

Michael and his colleague arrived, I left them to their meeting where the conversation continued. With all of the talk last week about "anecdotes don't make good science", Dr. Collins now has the face of a 45 year old mother of three, with no risk factors firmly in his mind. I am not an anecdote, and my survival matters, at least to the people in my little yellow house, but obviously to more people than that, because you are reading this!

He was most shocked at the fact of my "clean" mammogram in February 2008, progressed to cancer completely thorughout the left breast, including a 6 cm mass ten months later. His question was, "Was the cancer there in February 2008and it went undetected?" My question exactly. Dense breast tissue, nondigital mammogram. New calcifications spotted behind the left nipple, but no treatment recommended at this time. REALLY????????????

More later, I am fired up about this--surprise--and I have renewed energy to bring awareness to breast cancer.

Do your self-exam.

Schedule your mammogram.

JUST on the news--National Institutes of Health says to IGNORE the new guidelines!!!!!!!!!! YES!

[Comment From donna] 

Do you have feeling in your new breasts?

I have feeling on my breast skin that comes and goes. In talking with my doctor he says that this is a good sign at this point, and that I should expect to have significant skin sensation at the two year mark. I will never regain deep sensation, nor the nipple stimulated link to orgasm again.

The loss of deep sensation is a very frightening aspect prior to a bilateral mastectomy and it requires some psychological preparation. I would recommend counseling if you are facing this procedure, especially if nipple stimulation is an important part of your sexual life. I would recommend counseling throughout this process, regardless of your treatment choices.

Comment From JT:

Is there anything you did NOT want to hear from friends and family during this process?

That is a great question. I did not want to hear anyone else's cancer story. I was still in such disbelief that I had breast cancer that I was not interested in how long someone else has survived since their diagnosis. I also had no patience for advice--everyone's individual needs are so unique--it is exhausting to have to listen to any more information than you already have to.

It is also not a good idea to say that this is "happening for a reason." Sadly, you also have people not only telling you that it is happening for a reason--they will sometimes also tell you what the reason is!

You don't want to hear that you look so good, you must be " doing fine."

That is, don't go up to people and say: "Wow, you look great--you must be doing fine!"  There are so many different levels of well-being that how you look is the least of your concerns at the moment.

People sometimes think that a BC victim will reason this way: since I have to choose between my breasts and my life, it is an easy choice. But even though the choice is clear when put that way, it is not easy. The loss of your breasts and their functions is tremendous.

In talking about this loss, I'd like to recommend the book Breast Cancer Husband, by Marc Silver, as it covers many of the psychological aspects in a very thorough way.

Let me wrap up by saying that breast cancer is a diagnosis that the whole family receives.  If you are a wife and a mom, that is how you will experience and process your illness.

I cannot imagine going through diagnosis, surgery, recovery and treatment without my husband and children and their amazing commitment to me and my well-being. In turn, our friends and family found ways to help support us in very practical ways, while respecting our need for space.

Comment From Amy

I'm in my late thirties, and as I age I know that breast cancer will be affecting my peers, and perhaps me, more and more in the coming years. Can you talk a little bit about reaching out to friends when they have just been diagnosed? What brought you comfort or made you smile during this process?

Good question.  If your friend is diagnosed I would say the first thing is: all you can say is: "I'm sorry."  And really that is all you should say.

You should also think of practical ways to help her and just do them. Don't wait for the call asking for your help. It won't come. Practical things that you can do are: take the kids, get groceries, make a meal, do the laundry when you stop in, and do stop in! If you are really close, offer to help her with her shower, change the sheets on her bed and/or wash and blow dry her hair.

I set up a caringbridge website which allows you (the patient) to share information about your path through your illness with others who are concerned about you.  This helped us to stay in touch with everyone without hours on the phone recounting the same details endlessly.  It also provides an opportunity for people to post feedback and messages, which are often (but not always!) a great encouragement.

Through the website people were able to contact a friend of ours who coordinated the provision of meals. This was a huge help as we attended appointments, dealt with insurance, recovered from surgery, etc. We received meals three to four times a week for about six months. Having cancer is a full time job for the whole family, and life goes on. So while my husband took on taking care of me, dealing with his own emotions, extra household duties--he still had his normally full plate with work and parenting. It is an extremely stressful time.

I called out all of the troops (my friends and family) about two weeks prior to surgery for a big PINK PARTY/ONE LAST WHIRL WITH THE GIRLS PARTY. I had been hibernating while dealing with all of this new information, doctors' appts. and decision-making and I needed to see everyone and let them know that I was going to need them. It was bittersweet and did pull everyone together.

One friend drove me to a full day of appointments (in Philly) a few times and then camped out in my room two days after surgery so Michael could get some fresh air and just a break in general.  She came loaded with magazines and movies--which I was not in any shape to watch or read, but I was able to weeks later.  It meant the world to me to just have her there, spending time with me and then cheering me on as I hobbled down the hall for the first time!  My kids Skyped me from home for the first few days and came to the hospital three days after surgery and that was a definite spirit-lifter. It's all about relationships for me!

Right when I got home from the hospital, my sister made my most favorite comfort food in the universe--New England Clam Chowder--Great Aunt Ivah's recipe. My sister-in-law took me to the mall to shop for a bra--sounds pretty easy, but it wasn't.  You can imagine all of the emotional and physical implications of being in the lingerie department two weeks after a mastectomy--and looking at myself under the freaky dressing room lighting.  She made calls to different stores to see what they had to offer and led the way once we got there.  It was very overwhelming and I never could have done that without her initiative and encouragement.  My other sister-in-law drove me to a track meet to watch the girls compete (on a frigid cold day) and then grilled fish for us for dinner that night--one of our favorites.

Two of my aunts made quilts for me--I was overwhelmed with emotion when I received those in the mail, and even though my aunts are not local and I rarely see them, I really felt the love that went into making those for me--and they triggered great memories as well.  I will admit, I loved each and every floral arrangement I received and I have a huge basket full of cards and letters.  Never underestimate the power of a card--even if you don't know someone very well.  I know it took a lot of guts for my friends to see me because I understand that no ones knows what to say.  It was so encouraging when people put aside their own fears and offered to take a walk with me, or to stay and talk for a few minutes when they dropped off a meal.  It can be very lonely to have cancer, so time is a perfect gift.

My husband arranged for my hairdresser to come to our home two weeks after my surgery. In the middle of March (the doldrums anyway!), she did my highlights, gave me a scalp massage and a very spunky cut--wow, that was the greatest. I was in so much pain, but it felt so wonderful to be pampered in my own home.  A friend sent me a flat of gorgeous purple and yellow pansies, along with a note saying she and her daughter would do the planting!  I loved the days when someone brought lunch over, took a walk with me and just took the time to be with me--it also meant  the world to be able to be honest during these visits--I am not good at pretending.  Several friends took the train with me to Philly for my radiation treatment, and then we would have lunch.  Having to go for treatment every day for 7 weeks got old fast, and it was great to have company once in a while.  My recent experience with Beth Cardwell and her ThinkPinkPhotography put a big smile on my face and more confidence in my step!

I think the best guidance I can give on this is to think about your friend, think about what she values, along with what her challenges are, and try to do something along those lines to make her feel loved.

[Comment From JT] 

You are pretty young to have breast cancer. Did you consider getting tested to see if you had the gene that causes it? My mother had it rather young, and it's something I think about doing from time to time.

We consulted with a number of physicians about this, all of whom said that getting tested was something we could do.  But given my age and a complete lack of any relevant family history, they thought it unlikely that my cancer was genetically caused.

[Comment From Sue] 

I know many women who decided not to get reconstructive surgery after the mastectomy. What made you decide to go that route.

I could not conceive of waking up without physical breasts (if I didn't have to) as I knew that my body image, femininity and sexual identity were already being put through the wringer--just anticipating the loss of the function of my breasts. If I had to lose the functions of my breasts, did I also have to lose the shape of my breasts? For me, that was not an option. A very personal decision which I would never begin to make or judge for someone else.

I think part of the answer, for anyone, depends on the reconstructive options available to you, and whether or not you are comfortable with them. Knowing that I was a candidate for skin sparing modified radical mastectomy and DIEP flap reconstruction made me think it was worthwhile to undergo the additional procedure and recovery. (And it is a very lengthy surgery and recovery.)

I knew that it would be difficult, if not psychologically impossible, for me to wake up without physical breasts. And because I was offered the option of reconstruction at the same time that the breast surgery took place (during my second and third opinion visits), I could have the reconstruction without multiple surgeries.

It might be worth mentioning that there is a lot of misinformation out there about reconstruction.  When we first started learning we heard from some people that immediate reconstruction was NOT an option and from others that waiting was not a good option.

And it is important when you get conflicting information like that to ask your health professional explicitly to explain the discrepancy in what you are hearing. Often that opens the door not only to learning about what the options are, and what the pros and cons of each mode of treatment are.

People often turn to the web for information about their illness/treatment options and it can be a very helpful resource.  One thing that many people are not prepared for are the photos of outcomes.  They can be pretty frightening, in part, because so many of the pictures that are posted are cases in which something went terribly wrong.  This can give patients the wrong expectations about what is likely to happen to them.

Comment From Lynn] 

So I'm embarrassed to ask this, but I know that I am not happy with my breast size. If I had to go through reconstruction I would change my size from A to C. Did you do that? Is that selfish?

No, that is not selfish at all. My doctor explained that with the DIEP flap procedure they will often make your breasts larger than they were originally, in part because if you need radiation treatment (as I ultimately did), the radiation can sometimes shrink the donor tissue. So, in my case the answer is yes, I am now one cup size larger. If you don't like the larger size after radiation is finished, they can always make them smaller with liposuction(!). 

When I went for the initial visit with my plastic surgeon, he was not sure whether I had sufficient abdominal fat for reconstructing two breasts--and that is necessary for DIEP reconstruction.  So for three weeks I ate as much as I could! Without sufficient abdominal fat, the other reconstructive option is implants.

My reconstructive (plastic) surgeon said that his hope was that I would feel as beautiful after this was over as I did before the cancer struck.

I think that any woman who has to lose her breasts to cancer is entitled to choose her cup size at the end of the day!

My husband and I listened carefully as the doctors explained the implications to us.  And then we spent hours and hours every night accessing journal articles and deciding what was best for us.

But you're right, there is a sense of urgency, which makes it very scary.

We found it important to seek second (and in one case, third) opinions before making final decisions. It is nerve-wracking taking the extra time, but you want the best possible long-term outcome.

A good starting point for sound information is the website for the National Cancer Institute, cancer.gov.  I also found helpful information about reconstructions on breastreconstruction.org.  For young women facing breast cancer: pinkribbongirls.org.

[Comment From Jen] 

When thinking about breast cancer, I wouldn't know how to begin to tell my children without scaring them too much. How did you do this?

We told them the truth, which at the early stage meant that there was a lot we just did not know.  SO, we said that we wouldn't know some things until after the surgery.  We tried to stay as positive as possible, while also being emotionally honest.

As time went on, we told them more details about treatment and prognosis. We stayed calm and they then stayed calm. We let them know that this wasn't a secret--they could talk about this with others--they have needed their own support system too. We also notified their teachers, guidance counselors and coaches--even for our college-age son.

We also limited our time talking on the phone to people outside of the family so that we could communicate with our kids, and they were hearing a unified message from us. This also protected our time as a family and allowed for much needed down-time.

The following is the link to the archived Live Chat!

Navigating Survival: Breast Cancer from Diagnosis to Recovery

October 19, 2009

I left to catch the 7:06 AM train from Lancaster to Philly for the areola-nipple reconstruction surgery this morning.  Michael drove, hoping to get to UPENN by the time I was finished (the morning traffic is murder—so I was trusting Amtrak to get me there on time) so he could drive me home.  He had made a reservation online, and I forgot to scan the reservation, thus had no ticket when the conductor came by—it’s not like this was the first time I made this trip!  He very kindly sold me a ticket on the train and I settled in with my NYT. 

Halfway there—we made a dead stop right before Exton.  Okay, relax.  That was my self-talk, which worked through the tenth minute.  Then I dug put my cell phone, which, OF COURSE, had no battery charge remaining.  After another five minutes, I got up my nerve to ask the woman across the aisle if I could make a 30 second call to Michael.  I told him we had been stopped for fifteen minutes and had no idea when we would be on our way—a failed power control box in Atlanta was the source of our delay.  Michael called the hospital to say I would be late and we took off about 7 minutes later.  That was my walking time from 30^th street to the Abramson Cancer Center—taxi time.  Forget it, the line for the taxis was 30 people deep—thankfully, I had my brandy new running shoes on.  Seven minutes, yup!

I arrived, having had no time to get nervous.  I won’t go into scalpel details, but I was awake—YIKES.   Dr. Serletti has not heard of the calming effects of playing a CD for distraction sake.  The best part was him leaving the surgical suite to get a med student to assist him, after completely prepping the breasts and belly, and upon his return—the door was locked!  Not joking.  I was alone in the room and couldn’t move and he was telling someone to get the key.  I was a little skeptical as to whether or not these were bad omens.

Everything went well, he is as cool as a cucumber.  He performs 170 DIEP flap reconstructions a year—my trust couldn’t be stronger.  I didn’t love hearing all of the surgical sounds though!  I am now very cozily settled in front of the fire, letting percocet take care of the pain.  I have 5 books checked out of the library and will take a short walk tomorrow.  Again, I am happy to be on this side of a procedure. 

The following piece on getting what you need for your reconstruction is so well-written, that I want to pass it on—no need to re-invent the wheel on this one.  It is from breastreconstruction.org.  (A fabulous site.)  The only thing I want to add is, check out the credentials of any doctor to whom you are referred.  How many lumpectomies or mastectomies do they perform a year?  What is their specific training related to treating women with breast cancer?  How many implants do they deliver to women following mastectomy?  How many TRAM or DIEP flap reconstructions have they performed in their career?

What Do I Ask My Doctor?

You've been diagnosed with breast cancer, and surgery is imminent.  But, where do you begin?  Like many women, you want to prepare a list of questions to bring to your consultations with your breast surgeon and plastic surgeon.  In this section you'll find a great starting point. 

The most important part of your consultation with your plastic surgeon starts before you walk into the office.  You've done your research, you've asked friends and family for advice and you may have an idea of what type of reconstruction you desire.  Although that's a good starting point, it is likely that something essential is missing.  In order to ensure that you will have an informative consultation, you should make a list of your reconstructive goals.  This list will serve as a reference during your initial appointment with your plastic surgeon.  The “best” surgeon is one who will discuss these goals honestly, and establish what is realistic, and what is not.  Every member of your team of doctors, from your breast surgeon to your radiation oncologist, needs to be on board with the aesthetic goals for reconstruction that you establish with your plastic surgeon.  If all of your doctors work together, you can create a “dream team” that can hopefully make your reconstructive goals a reality.

Putting together a list of goals may be easier for some than others.  Try to establish three to four main goals (see example below).  Ask yourself what you want to get out of reconstruction.  Achieving symmetry?  Matching your other breast?  Having breasts that are larger or smaller than they were before cancer?  Your aesthetic goals should include anything that you desire.  Even if your goals seem unrealistic; your surgeon can go over what is achievable and what is not. 

Example: Jane Doe is 33 years old, and has invasive cancer in her right breast. GOALS:

 Remove both breasts, left side prophylactic

 Maintain my full C cup, if not one size bigger

 Keep my nipples

 Get the most natural looking and feeling breasts

Jane presents these goals to her surgeon.  Along with these goals she has a list of questions:

Which type of reconstruction am I the best candidate for?  What are the risks and benefits of this procedure?

Will this procedure meet my reconstructive goals?

How many surgeries are involved with this procedure?

What are the complications that can arise from this type of procedure?  What are the rates of infection and other morbidities?

What are the lifetime maintenance requirements for this procedure?

How many times have you performed this procedure?  How many failures have you had with this procedure?

Can I see before and after photos?

Do you have a former patient that I can talk to over the phone?

What are the next steps - including insurance approvals and preparing for surgery?

In Jane's case, she describes what is most important to her.  Ideally, she would like to have reconstructed breasts that feel natural, and have a substantial size.  Keeping her nipples may not be possible, but if she didn't present that goal to her surgeon, it may have been overlooked.  Wanting a more natural look and feel to her breasts, the surgeon may recommend a flap procedure; however, Jane would need enough of a donor site to support her desire for large breasts.

This is just one example of why it is essential to have a list of goals when you go into your appointments.  You will walk away feeling like you have a connection with a surgeon that takes the time to listen, answer, and thoroughly explain what is and what is not possible.  Knowing that you are on the same page with your doctor will leave you with less anxiety and new found hope as you approach your surgery date. From breastreconstruction.org.

 October 17, 2009

One of my guilty pleasures is sitting in my Adirondack chair and reading the New York Times--the real paper deal, newsprint smudges and all.  On a balmy October day in 2008, I sat out back, fascinated by an article about a Pilates instructor (mid-30’s) who learned she needed to undergo bilateral mastectomy and wasn’t going to settle for waking up with no breasts and waiting for her reconstruction.  I was even more intrigued to learn about the procedure she underwent, utilizing her abdominal tissue and fat to make the shape of breasts and attaching blood vessels, while sparing her own skin (not using the areola though—that generally needs to go)—a DIEP flap reconstruction.  Little did I know that tucking this article away in my mind would help me make one of the most important decisions in my life.

The cancer entirely filled the ducts in my left breast, from behind the nipple back to the chest wall, with a 6 cm. mass at the 6 o/clock position.  There were suspicious cells in the right breast, in the same 6 o’ clock position—remember that I had a “clean” mammogram just 10 months before.  Could I have the left breast removed and then find out in six months that I needed a mastectomy of the right breast as well?  I decided I couldn’t live with the anxiety.  The plan put forth to me in Lancaster was that I would have both breasts removed, the breast tissue would be biopsied and then we would know if I would undergo radiation and/or chemotherapy.  I was told if we knew that I definitely didn’t need radiation that I could have immediate reconstruction, but it would be bad for the reconstructed breast to receive radiation. What would the deciding factor be?  If the cancer had spread out of the breast.  I just wasn’t able to accept that plan, so we made some other appointments. 

Among other things, a medical oncologist really helped me think through the sensation loss issues—believe me, I had already realized what a devastating aspect that would be for me.  I’ll come back to this in another entry.  I was petrified at this point, we had no idea if the cancer had left the breast.  Another aspect that was completely demoralizing was that I was not scheduled to see the plastic surgeon until after my breast had been removed.  Doesn’t he want to see how I look now?  I also knew that a skin-sparing reconstruction could be done, if performed on the same day.  I had seen the photos of women who opted for delayed reconstruction.  That sent me into tears.  Yes, I wanted to live, but I also wanted to have the least amount of scars, and one surgery instead of two.  What we learned at this point was that you need to advocate for the best plan for yourself by seeing every member of the medical team that will be a part of your treatment and recovery--PRIOR TO SURGERY.  It was during our second visit with the general surgeon I had consulted for the mastectomy, that I brought up my desire for the DIEP flap reconstruction option.  I was told that DIEP flap is not performed by anyone in Lancaster.  This brings me to my next encouragement point.  Get a second and third opinion.  More on that another day.

I know that some of you are thinking, you are lucky to be alive.   I wholeheartedly agree with you.  I just spent the day taking one of my daughters to get an updo and her nails done for homecoming and doing the makeup and finishing touches for my other daughter as they are both at Homecoming tonight.  My son and I are totally bummed that Notre Dame lost against USC tonight.  I spent last Sunday biking and happening upon the cranberry harvest in Cape Cod with my high school sweetheart (whom I have been married to for 25 years).  I am so thankful to be alive, no doubt.  Every day carries blessings that I so want to be here for. 

Like you, I also want to feel beautiful and I want to look in the mirror and feel that I am the same person.  If you have not undergone a mastectomy, think about how hard you can be on yourself when you look at your body (not having had parts removed).  Imagine that instead of your breasts you had scars, or you had mounds that looked like breasts, but you couldn’t feel anything.  Prior to March 3, 2009, I never had an inkling of what to would truly be like to lose the functionality of my breasts.  I tried to imagine it, because I knew it was going to be my reality. I will never have my breasts back, or the functions of them.  To put it very bluntly, that little chill that runs down your spine and throughout your nervous system at someone’s touch to your breast, is a possibility that is gone forever for me.  A loss that I grieve every day.   Certainly new sensory pathways can be followed, but a loss in fact. You will hear people say, or you may have said, "If I am ever diagnosed with breast cancer, I would have both breasts removed, regardless of the extent of the cancer or involvement in both breasts, no doubt."  That is a very easy thing to have roll off of your tongue before it is actually you.  Each cancer patient's diagnosis is different from the next's, as is her support system and her specific definition of quality of life FOR HER.  

It is not just about prolonging your life, it is about multiplying your days (surviving) and enjoying the best quality of life possible during the rest of your life (thriving).  My body image, femininity and sexuality has been deeply impacted by the loss of my breasts.  (Yes, I know it looks like they are still there--Dr. Serletti is a miracle worker, as is my breast surgeon, Marcia Boraas, who left me with no visible scars!) So a huge part of the work toward flourishing is reconciling, in my on mind, that it appears that I have breasts, but they don't function.  How do I integrate this actuality into my conception of myself as a whole person?

Through a very funny twist of connections, I was able to take part in a photography experience last week that has had an extremely positive effect on my self-esteem and outlook.  Beth Cardwell, a local photographer, takes part in THINK PINK PHOTOGRAPHY, an organization that allows for breast cancer patients and survivors to receive a sitting at no charge, along with ten free prints from that session.  The photos are posted on Beth’s gallery and if anyone chooses to purchase photos from that sitting, the proceeds go to furthering this endeavor.  It is so much more than that though!

I had never met Beth and after about two minutes, it was as if we were very comfortable friends.  She made me feel so relaxed and she really focused on getting my personality to shine through.  She was looking at me as a whole person, not simply a woman defined by cancer.  She highlighted my strengths as she asked questions and gave encouragement.  I had a lightbulb moment when I really believed that beauty can come out of this horrendous ordeal.  The quirky aspect of this is that Allison Schwartz from Channel 11 news had contacted both of us independently to see if they could do a story on her photography with cancer patients/survivors and my story of navigating this path as a young woman with no risk factors.  CRAZY!

Click on this link and you’ll get a glimpse of my lunch break last Tuesday!  I hope you can join in on Tuesday night for the Live Chat and ask any questions you may have.  I am headed for the second step of my reconstructive surgery on Monday morning---the areolar/nipple construction, another step toward wholeness.

http://edisk.fandm.edu/michael.murray/Shield/Kirsten.mov

Numb completely describes how I felt on that drive home from the consultation.  Michael’s response was to “flip into action”.  He wanted answers, solutions, a plan for fixing this.  I wanted to curl up and go to sleep.

But what we had to do was figure out how we would tell our 19, 15 and 13 year old children. During one of the millions of appointments over the last nine months, one nurse asked me how old my kids were.  When I answered she said, “Oh, they are pretty much on their own, this wasn’t such a big deal for them.”  You know I couldn’t pass up this teachable moment!  I let her know that they understood enough to be fearful from day one, had friends who had lost their moms to breast cancer and were looking up recurrence and survival statistics.  At this age, not only did we have to give accurate information, we had to guide the processing of that information.

In telling our kids, we followed the guiding principle that we had always stuck to in sharing tricky information with them.  We told the truth and answered their questions, but didn’t do the data dump.  We told them that I would need some surgery to remove some cells that were cancerous and that we weren’t sure about treatment following that—which was the truth.  We said that I was very healthy and that would help in my recovery.  We let them know that this wasn’t a secret, they could talk to their friends about it—we didn’t want them to feel isolated by this difficulty.  We let them know that there was no question that was off limits.

Figuring out how to tell friends and family was not easy either.  A very short list of family and friends, written on the back of a junk mail envelope, got phone calls—not easy at all.   After those 12 phone calls, I came upon caringbridge.org.  I sent out emails to everyone else, sharing the link to Caringbridge and telling them that this is how we would keep everyone updated and not lose our sanity.  (We have lived in many places in our 25 year marriage.)  I was certain that it was going to be exhausting setting up and attending all of these appointments, checking out insurance details, getting things in order at work so I could be out, making treatment decisions, and emotionally navigating these dark waters as a woman, a wife, a mother, a co-worker and a friend.  I did not want to be telling and retelling the details over the phone or in individual emails while what our family needed was to spend that time together—when we had it.  I wanted my husband and kids to feel like they were priority one when it came to communicating during this time.

I let everyone know how they could stay posted, they tapped into Caringbridge or they didn’t, and I did not allow guilt to enter the picture once when it came to returning calls or emails personally.  I heard and read the messages, but had no capacity to respond.  If it wasn’t okay with someone that I didn't return their call—I didn’t know about it!  I did learn that there are folks who want the cancer patient to make them feel better about them having cancer—I didn’t buy into that.  I wasn’t in any place to make someone else feel okay about my cancer!  I thought  it sucked.

A very close friend, who loves me enough to tell me the truth, even when it isn’t pleasant, told me I had to let people help me through this.  She gently talked to me about being vulnerable, while she sat by me and let me experience the real flood of fear, disbelief and dread.  She told me to think about how she could facilitate people bringing meals—a gigantic help in many respects.  This cancer deal was fulltime work on top of a full life.  And life marches on.  SO, using caringbridge.org, I listed her as the meal coordinator and I gave her preferences (I have two teenagers still at home!) which she shared with friends interested in helping us in that practical way.  I don’t like to ask for help.  I am like a perpetual two-year-old—I want to do it myself!!!

Don’t try to do it on your own . . . .

Today I took the train home from 30^th Street Station for, what felt like, the millionth time in the last nine months.  I had appointments at the Hospital of the University of Pennsylvania (HUP) that spanned the entire day.  As Michael and I left the house at 6:30 this morning we talked about how different it felt to be headed for the appointments today.  I only had a slight case of “nerves” today, as opposed to the all-out dread I have felt about the numerous other hospital visits.  But there is always that little voice of doubt.

So we revisit the day of the mammogram and sonogram, on Christmas Eve day 2008, no less.  But, before I left the Breast Center the day before Christmas, I met with the doctor who reviewed all of the images that were recorded.  We were going to schedule a biopsy after the first of the year.  Why weren’t we doing it that day?  Why more waiting?  All this “we” talk—there was no “we” about it.

So, our holiday had a bit of a cloud over it, but I managed to mostly push it out of my mind—except for the fact that my left breast was constantly sore and was now one full cup size larger than the right breast, with some discharge.

I had to wait until January 6 for the biopsy because there was no room in the schedule prior to that.  My 19-year-old son, home on break, was the designated driver that day.  The biopsy didn’t go swimmingly.  Apparently, my breasts are very dense, which turns out to be an important factor. You don’t want the details, but suffice to say, it was much more painful and scary than I anticipated.  You lie flat on a table, with your breast dropped down through a hole in the table, the table is then raised to a height of about five feet and everyone works on you from below—I felt like an old jalopy in for a tune-up.  The darn needle got stuck—not a very thin one at that.  So, I left with fluids oozing, a hematoma forming and my breast packed in ice.  On my way out, I set up my consultation, to which I was told to bring my husband, friend or other family member.

The most vivid afternoon, for me, was the “consultation” with a doctor of radiology, four days following my biopsy.  We pulled up to the Breast Center and my husband said, “Whatever happens today, everything is going to be okay.”  I told him it would be okay, because there was no way this was cancer.  We gave each other a nervous kiss and went inside.

Sitting on the absolute edge of the brand new couch in this clutter-free, faked-up living room, our only conversation was the joking about Michael’s newly broken hand—just casted that morning—no lie!  A doctor entered the room—a doctor whom I had never met before, followed by a nurse carrying the equivalent to a semester’s worth of books in her arms.  Big clue—went right by me.  They joined in on the kidding about the broken hand for a few minutes and then silence.

The doctor cut to the chase and after telling us that I did have breast cancer, doled out lots of information that fell on my deaf ears (this must be why they say to bring someone else--to hear what is said while you are reeling).  I even missed the part about the cancer being throughout the entire breast, and that meant a mastectomy.  I could not breathe, all I wanted to do was race out of that artificially serene room.

I had my wits about me enough to ask how I could have a “clean” mammogram 10 months prior and now I had cancer.  He said two things that every woman should know.  The first thing is that the mammogram I had in February 2008 was NOT A DIGITAL mammogram and that I have very dense breast tissue, so perhaps it didn’t show up due to those factors.  Too late for me, but not for you or someone you love.

What I want to say here is that younger women generally have denser breast tissue. “Breast density refers to the proportion of fat and tissue in the breast. If someone has low density, it means there is more fat in one’s breast compared to tissue. When a mammogram shows dense tissue, it’s difficult to distinguish between cancer and dense tissue because both show up white. Dense breast tissue is one of the leading risk factors for breast cancer.”  New Haven (CT) Register, June 28, 2009 (go to http://www.nhregister.com/articles/2009/06/28/life/doc4a45884495b9d987722898.txt for complete article, along with areyoudense.org)  Connecticut governor and breast cancer survivor, Jodi Rell, signed into law that mammography reports are required to include information about breast density.   This should be true nationally, not just in Connecticut.

I walked out of that room and building a different woman.  I was now a member in that club that no one wants to join.  I couldn’t feel the bitter cold wind, but every sound was magnified a million times.  I could hear the frozen grass blades crunch under my boots.  I entered a period of ultra-heightened perception, a state that I remain in.

So on the way home from HUP today, I was completely soothed by the gentle motion of that very familiar and comforting  train.  I collapsed in utter relief, hearing today that I do not have any evidence of cancer left and my irradiated skin is so healthy that I can now schedule the areola construction.  This moves me to another milestone in this journey. Words cannot begin to express what this means to me and I am ready for a peaceful sleep.

How we told our kids, our extended families and our friends for next time.

"How did you find out?"

This is the most frequently asked question, once someone learns you have breast cancer.  Or the question goes , "Did you find the lump or did your doctor?" Then assumptions are made and someone asks, "How many mammograms had you missed?"  The answer to those FAQ's are, in my case, respectively:  I knew something was wrong because I had chronic breast pain, which intensified, from late summer to late October.  I didn't find a lump, but noticed that my breast was gel-like in the painful area.  I had not missed any regularly scheduled mammograms, and had my most recent one in February 2008, 10 months prior to diagnosis.

Here's the thing.  Every woman you talk to, who has received a breast cancer diagnosis, will answer those questions differently.  There are a few lessons here.  You need to know your breasts.  You need to be persistent about getting any differences checked out.  When I went in for the appointment, my doctor did say that pain is not usually associated with cancer--of course, we both wanted to hope for the best and there were no other warning signs. Simply having a mammogram does not keep you safe.  You should receive a written copy of your mammogram report and compare the written text to the previous year's mammogram.  Notice for yourself any differences that are mentioned.  Be assertive if you have any doubts.

The fact that every woman's experience with breast cancer is so unique brings up another important aspect of being the parent, friend, sister or co-worker of the woman diagnosed with BC.  "My friend was diagnosed 10 years ago and she is doing GREAT!", or "I have a co-worker who is going through the EXACT SAME THING"--doubtful!  No single case of breast cancer or course of treatment is exactly the same.  Every BC patient's life situation and support network varies widely.  So, resist all temptation of telling her everything will be fine.  First of all, it may not be fine.  Secondly, even if the cancer is eliminated and she lives another 50 years, she will never be the same.  She may lose both breasts (and all of the functions that go with those breasts), or she may have multiple lumps/tumors removed and never know when another will appear, or she may lose her hair during chemotherapy or she may lose her job because she wasn't able to take an FMLA.  The possibilities for change are endless.

There are possibilities for change in the "GOOD" column too, but it is never the right thing for anyone, other than the cancer patient, to verbalize that. When your friend tells you about her diagnosis, bite through your tongue before you even think of telling her what good things might come of this. There is one, and only one thing to say.  

"I am sorry."  That's it.  Nothing more.  

Journal entries from February 2009-September 2009 @ caringbridge.com enter "kirstenmurray"

In two days, it will be seven months since I parted ways with my breasts. "Kirsten, your breasts are not your friends," my breast surgeon diplomatically announced while we were discussing the best plan for eliminating the cancer.  

I may sound a tad flip about this, but it is still doesn't seem real.  I wake up every morning hoping that I have had a horrendous nightmare.  But then I turn on the shower and glimpse my altered state as I pass the mirror.  On my brave mornings I stare directly in the mirror, and on others I nonchalantly gaze out the window and pretend all is normal.  Windows reflect enough to snap me into reality.