Doing my homework.

I've been doing some homework...reading all of the information that I was given by the oncologist's office. Yikes. The two drugs that I will be given with each of my chemotherapy cycles are doxorubicin (Adriamycin) and cyclophosphamide (Cytoxan). After I finish those 4 rounds of chemo, 2 weeks apart, I will be started on hormone therapy with either tamoxifen or a newer kind of drug called an aromatase inhibitor.

Here is a partial list of potential side effects:

infertility (Oh well. I had my chance.)

total hair loss (including eye brows, lashes, pubic and other body hair)

cystitis (bladder infections)

immune suppression with decreased resistance to minor illnesses

fuzzy thinking (also called "chemo brain")

fatigue (increasing with each cycle)

conjunctivitis

mouth sores

runny eyes and nose

anorexia

nausea

vomiting

diarrhea

constipation

weight loss

weight gain (21% of women gain weight during chemo)

heart damage

increased risk of leukemia

increased risk of ovarian cancer after age 50

menopause (side effect or bonus? You be the judge.)

hot flashes

night sweats

mood swings

fluid retention

loss of feeling in hands and feet

local tissue damage (skin burns) if medications leak out of vein into surrounding tissues.

Perhaps I will stop reading now.

It is important for me to keep in mind that these side effects don't occur in all patients. It is also important for me to remember that our friends in the pharmacy are very good at suggesting different ways of dealing with side effects including decadron (a steroid) and zofran (an anti-vomiting medication). We love our pharmacy friends! I must also remember that the side effects will stop when the medications are done. That means just 8 weeks of potential discomfort. That is a small trade-off for a longer, cancer free life.

Please remind me of that during my chemo. I might have trouble remembering that then...you know, chemo brain!

Shopping for new breasts.

How many women get the opportunity to shop for new breasts. Oh...lucky me! Today my friend Betsy and I went shopping for my new breasts. Now that the drains are out, I had the first fitting. We went to a place right in Woodury called Superior Medical Services. We had an 11:00 appointment with Linda. She greeted us an took us into a very large fitting room with comfy chairs. She started by getting some information from me about what kind of bras I liked. She then started bringing out boxes of bras for us to look through. I settled on a rather shapeless, yet soft one that Linda recommended while my incisions continued to heal. I put it on and then she started searching through these huge cabinents of products for the right prosthetic breasts. She tried me in several different shapes and sizes of products. With each new one, she had me put my turtleneck back on so I could see what I would like to the world. At this point, Betsy and I would discuss and vote...too high, too low, too perky, too big. Linda just kept trying different combinations. Who knew there were so many things to think about. We all finally agreed on the bra with the right prosthestics. They are soft, temporary ones. I think Linda was a little disappointed that I didn't want to wear my new boobs home. By the time I was finished I was tired of trying on things and a bit sore as well. I was all set for a bit of lunch and home for a nap. In another couple of weeks, I can be fit for the "real" prosthetics. They will be silicone with a more natural fit and feel. There are also some nicer bras to wear when the incisions are more healed.

During this whole process, Linda reminded I could be any size that I wanted to be. I was tempted to try out some DDs but I didn't want to look totally ridiculous. I already feel a bit ridiculous knowing I will have synthetic breasts but considering the trade-off, I am fine with it in the long run. This was truly an experience that I had never imagined having. I am so glad that Betsy went with me. She was able to provide some prospective that I didn't have. We managed to giggle a bit as well.

I am still processing all that we learned about chemo and hormone therapy yesterday. The oncologist's office gave me a huge file folder of information I haven't been able to look at yet. Not because I don't have the time...just because I haven't wanted to yet.

Lies, damn lies and statistics.

My friend Jim Wilson eloquently defined the term 'statistics' to me once. He said (can't use quotes as I may get this wrong) statistics are how to lie with numbers. What I found out today after our meeting with the oncologist is that there is surprisingly little data out there that is conclusive and specific with regards to breast cancer. Sure there is alot of data and a tremendous amount of statistics but all of these things come together to form a set of guidelines. Just suggestions...ideas about things that may work in some situations. The other thing we learned is that the majority of the breast cancer research to date has been done on stages II+ cancers...the 'big, bad' ones as opposed to the 'little' one that I have. So after pouring over statistical reports, reviewing all of the NNCN and ACS guidelines, we learned today that there are no absolutes and that my situation does indeed fall into the gray zone.

Mary and I went to the Piper Center to see the oncologist together. We arrived promptly on time but had been tipped off by the nurses that he doesn't run on time very often. We settled in for a long wait and were pleasantly surprised to be roomed and had all of priliminary stuff taken care of quickly. Everyone was incredibly nice as well. He came into the room a few minutes after that and pulled up a chair. 90 minutes later we were still talking. At no time did he ever glance at his watch or make the slightest leaving motion. He took us through my entire pathology report (now totaling 13 pages) as well as all of the possible combinations of long-term care plans from doing nothing more to doing chemotherapy and hormonal treatment.

One thing he showed us was particularly interesting to me. This is called Adjuvant Online. It is a computer-based treatment decision making tool. You input the patient's information: age, health status, tumor information and it calculates the risk of the breast cancer recurring in 10 years. This is my chart. If you look at the bar graph, the green bars are the number of women who are my age, have good health and have my kind of tumor who are cancer free in 10 years. The red part of the bars are those women who have a recurrent cancer within 10 years of diagnosis. The tiny blue part are those women who will die regardless (car accidents, heart disease, other causes) and this number doesn't change: 2.1/100. If you look at the 3 bars, the first one are women who use hormone therapy only. More of them are cancer free at 10 years. The same is true of women who use chemotherapy only. More of them are cancer free at 10 years too. If you look at the bottom bar, those women who used chemotherapy followed by hormonal therapy had the best outcomes. Only 5.6/100 women had cancer recur in the 10 years that followed their treatment. The red part of the bars (the number of women who get cancer again) gets smaller and smaller. After reviewing this together, I decided (with Mary's support) to do chemotherapy followed by hormonal therapy.

After we talked with Zander more about the chemo process, drugs, scheduling, etc. Mary asked him essentially what he thought of the decision I had made. He said that if I were his wife or daughter, he would have recommended the same thing that I chose. That cinched the decision in my head.

So. The date is set. Chemotherapy will be 4 rounds of drugs spaced 2 weeks apart beginning the first week of April. We have a vacation planned and I am scheduled to study for and take my acute care boards (additional NP certification) in Florida during the last week of March. Zander wants me to be fully recovered from my surgery before beginning chemo so said he won't let me start until after we return. Statistically there is no difference in waiting 2 weeks to begin treatment.

But here's the big news of the day! I got both of my drains out. Those things were HUGE! No wonder I was so uncomfortable with them in. I feel like a new woman without them.

There is finally a plan in place for treatment of my cancer. I feel good about the decisions I have made. I also feel supported in these decisions by my partner and my oncologist. Perhaps that is contributing to my feelings of contentment this evening.

How big is a centimeter?

A centimeter is a unit of length equivalent to 1/100th of a meter or about 0.393700787401575 inches. So how can an object half the size of a penny, smaller than an M&M or about 40% of an inch have such a dramatic impact on your life?

If it is a rock in your shoe, a zit on your cheek the day of a big date or a malignant tumor in your breast, the impact can be phenomenal and life-altering.

One of my ED MD friends sent me the National Comprehensive Cancer Network/American Cancer Society Breast Cancer Treatment Guidelines. Thanks Joe! Unfortunately for the oncologist I am going to see tomorrow, I am reading it. I am not; however, able to understand all of it. I am just a nurse practitioner and I don't have my complete pathology report in front of me. I also don't have the information related to the hormone receptivity of my tumor. That wasn't done yet. What I do know is that my tumor was grade 3, 0.9 cm with clean margins and my lymph nodes were negative. This makes my cancer a Stage I.

The documents contain multiple decision trees for treatment of the various stages of breast cancer. According to the treatment guidelines, if the tumor is less that 1 cm but has bad features (BAD tumor!) then chemotherapy is possibly indicated. If the tumor is greater than 1 cm regardless of features, chemotherapy is indicated. I guess there is some gray zone here. What is a bad feature? Is my oncologists definition of a bad feature the same as some other oncologist's?

So let's go back to considering the size of 1 cm...see above photo. What is the difference between 0.9 cm (the size of my tumor) and 1 cm. The obvious answer is 0.1 cm or 1 mm. How big is one millimeter? A millimeter is 1/1000th of a meter or 39.37×10−3  inch. The short answer is not very big! So then, how big of a difference is there in a tumor that is 0.9 cm vs. 1 cm? Again, not very much.

The medical head of mine understands that clinical treatment guidelines are based on sound evidence. Years of clinical research lead the greatest oncological minds to develop the treatment guidelines that recommend chemotherapy for tumors greater than 1 cm. I suspect that when these guidelines were developed, there was even some overlap involved. Perhaps it was determined scientifically that no chemo was needed for tumors less than 1.25 cm but to be "on the safe side" the parameter was set at 1 cm. I understand all of those things. HOWEVER, the part of my head that knows I have cancer can't help but wonder what difference 0.1 cm makes in determining treatment that could have an effect on your lifelong health and well-being.

So then, how big is 0.1 cm? It depends. It depends on which part of my brain is thinking. If it is the medical part, like the oncologist, it is not a significant difference. If it is the emotional part of my brain, the patient part that has cancer, it is an enourmous difference.

Didn't you get your invitation?

If you didn't get your invitation to my pity party, that's good because IT'S OVER! Enough of the self-pity. I am not dying and am fortunate to have a circle of love around me that is incredible. Each day I am touched by the phone calls, email and regular mail that comes my way. I have terrific healthcare providers who put up with my daily phone calls and questions. All of the Piper Breast Center nurses know me by name now.

I have appointments with 2 different oncologists next week. The first one is scheduled for Monday with the oncologist that my surgeon recommended. The second one is scheduled for Wednesday with someone I found on Mpls/St. Paul magazine's top doc list from January, 2007. It never hurts to get 2 opinions.

I do believe that life never hands us more than we can handle. There is a reason why I was diagnosed with breast cancer at this point in my life. I may not completely understand what that reason is yet but I will at some point.

Time to grade papers. I am fortunate enough to be able to keep doing some work from home. I am very lucky not to have to be out driving today!

Emotional

Emotional would be the best word to describe me today. I think the reality of this new diagnosis is really becoming a part of me now. I have cancer. I am 48 years old and finally felt as though I had my act together and my life going in the direction I wanted it to go. Now I have cancer. While I believe that I am going to survive this episdoe, the thought of long-term survival is difficult. In my mind, I will always have cancer.

Today it is gray and windy outside. All the weather people can do is talk about "the big one" that is going to hit this weekend. Today I am gray. I am tired of the pain, albeit manageable, it is present. I am tired of the leaky, icky drains hanging from my body. I am tired of people who say they will "get back to me" who don't. I want an appointment with my oncologist and I want to know what to think about my immediate future. I still don't know about my need for chemotherapy and I am growing increasingly impatient with the lack of a care plan.

All of these feelings are difficult for me to express. I cry for no apparent reason. I don't want to work on the computer, read, knit or watch another movie. I want to go to work where I know what I am doing and I am in a bit more control. I want to take the dogs for a walk. I want to worry about the scale increasing a half a pound. I wamt to play hockey, go skiing and obsess about how I am going to get everything done. I want to figure out how to get music from itunes to my (not iPod) mp3 player. I want my life back as it was.

I don't want to think about cancer.

Tit Bits

I think it is important to maintain a sense of humor at all times. Apparently other women with breast cancer do too. Yesterday while perusing some of the breast cancer websites, I ran across something that made me laugh hard. Tit bits. Beryl Tsang, a breast cancer survivor, knitter and a woman with a wonderful sense of humor published a story about her struggles with prosthetic breasts. To solve her problem, she created her own knitted breasts called tit bits. I looked at the pattern to see if I could knit some up for myself but the pattern seemed too hard for a novice knitter such as myself. I emailed my friend Marianne who is an accomplished needle-arts expert and reminded her that she said I should let her know if there is anything she could do for me. She is now working on a pair of tit bits for me. Please check Beryl's website. It is wonderful. Here is the link: http://www.titbits.ca/v1/tb_home.html. I think I need a pair of floosie tit bits!

Today is a tough day. It has been one week since my surgery and I think I should be farther along in the recovery process. My right side/drain seems to be doing fine with gradually decreasing amounts of fluid but I have having difficulties with my left. While the tube is still draining some, I am also draining from around the insertion site and that is pissing me off. It is always wet and sticky. My whole left arm is more painful and my hand is swollen. The nurses at the Piper Center tell me this isn't necessarily a problem. That's because they didn't wake up in a sticky mess this morning...I did. I am trying to avoid taking vicodin because I would like to have the option of driving if there is somewhere that I want to go. Mary is home today and tomorrow and is encouraging me to use the vicodin since she can take me anywhere I want to go. Besides...where is there to go anyway. I don't feel particularly social with these lovely drains hanging out of my chest.

Perhaps the drain issue isn't all that bad. I think I starting to feel a bit sorry for myself as well. I am starting to feel more connected to the fact that I have cancer. I don't know if that makes sense to anyone. It is almost as if it (cancer) is starting to become a part of who I will be for the rest of my life. Up until the last day or so, I've had things to focus my attention. Getting appointments lined up, reading and learning as much as I can about breast cancer, and I have been sleeping more. As I feel physically better and have things kind of set up, the emotional aspects of this disease are starting to become more central. Last night my friend Marsha was here. She is able to get into my head in a way that just a few people are able to do. We talked quite a bit about cancer in my life. While I will be a breast cancer survivor, I will also and forever more be someone with cancer. I am having difficulty accepting that as a part of my identity at this point in my life. While I am getting to be a surly old broad, I am only 48 and in the best shape of my life. How dare this darkness come now...

Who's in your family?

Who is in your family?

An interesting question to ponder. Most of us think it is a pretty easy question to answer but this experience has caused me to do some thinking. When we are younger, we typically think of our family as being those biologically related to us...our family of origin. For me, that is now just my mother, sister with some assorted aunts, uncles and cousins out there. As we get older we form our own relationships and people get added to our family through marriages and births. To my family, I then added a niece. When I was in graduate school the first time (in the late 1980s) my minor was family social science. For one of my courses I needed to write a definition of the term 'family.' No problem, I thought and began to write. It was a difficult task. By that time in my life I had identified myself as a lesbian but as yet, had no permanent partner. My family began to include different members~close friends of mine that I chose to include in my definition of family. My family of choice. I don't recall the exact way I wrote the definition of family at this time but it was something about being a group of people who share love, a common history and goals.

Now, years later I must rethink this definition of family...my definition. Certainly my family includes my biological members: Mom, Pat and Alvin. But now it includes my life partner Mary and her biological family members. Her family also came with sister- and brother-in-laws since they were 'in' her family before I was. There are also some friends that I include in my family of choice. They are just as important to me as my family of origin and my family of partnership. Yet, according to Wikipedia (2007), a family is a domestic group of people (or a number of domestic groups), typically affiliated by birth, marriage or comparable relationships such as domestic partnership, cohabitation or adoption. This definition would suggest that friends are not a part of one's family. Then there is the issue of those family members who choose to form intimate relationships. Some even remarry. What about these new people? Are they members of my family or not? And what about the new people's children, sisters, brothers, nieces and nephews? Are they may family members too? According to Wikipedia, yes. They are. Certainly these people are members of families of those family members who chose them but are they necessarily members of mine. Getting confused?

I teach a nursing course called "The Family as Client" each year. The focus is on providing nursing care to a family unit rather than an individual. In the first class we discuss this notion of family and discuss the idea that it is the family, not the nurse that decides who is a part of the family (Friedman, 2003). Some members of my family of origin feel as though there are situations that should be limited to "family only." Ok. I can agree with that. But the patient (me) gets to decide who the family encompasses. Since Mary and I are the family involved in this health care issue together, we are the ones who decide who our family is. I am not sure that there are any particular parameters...length of time we have been friends, significance of friendship, origin of friendship, whether or not you have seen my incisions...but we are still the ones who get to decide.

We need our family and our friends around us right now. We don't need our family members fighting over who is in or out of the circle. That is as ridiculous as it sounds. We need you all.

References

Friedman, M., Bowden, V.R. & Jones, E.G. (2003). Family nursing: Research, theory and practice. (5th ed.). Upper Saddle River, NJ: Prentice Hall.

Wikipedia, The free encylopedia (2007). Family. Retrieved February 21, 2007 from http://en.wikipedia.org/wiki/Family

Worth the Wait!

I finally was able to talk with the surgeon this afternoon. The news is all good. She told me to plan on being an old woman "like the rest of us!" This was music to my ears! The cancer is Stage I on the left with no malignancy (just precancerous cells) on the right. The tumor size is on the border of needing chemotherapy. The cut-off is 1 cm and mine is 0.9 cm. We will be meeting with an oncologist but not until next week at the earliest. According to the nurse at the Piper Center, they want to wait until you are about 2 weeks post-operative. Although I don't really know anything new related to long-term treatment, I feel much more calm about it all. There was a definite sense of relief after talking with Dr. Stoller.

I am happy to be home, watching a movie with Allyson (my caretaker today...Mary went back to work). I am even happier to know that I will have the priviledge of spending many more days at home...

For the first time since getting this diagnosis, I truly believe I am going to beat this disease. Thanks to everyone who believed this long before I was able to. It has been the faith of many that have gotten me to this point. I am so grateful. We both are.

Waiting for the phone to ring.

Like a scorned lover, I am waiting for the phone to ring. Dr. Stoller did not call with my pathology report yesterday. Of course, I was on the phone at the crack of dawn (my crack, not yours!) to her nurse. Of course the nurse cannot actually read me the report. She did tell me a couple of things though. The lymph nodes were all, officially negative. Good. The margins of the tumor were clear. Very good. The tumor was 0.9 cm. Especially good. According to my interpretation (that means I looked it up in the Breast Book [2005, p. 269]) I am at a Stage I which has the greatest outcome. Yea. But before I get too excited, I need to talk to Dr. Stoller.

And so I still wait for the phone to ring...

Reference

Love, S. M. (2005). Dr. Susan Love's Breast Book, 4th Ed. Cambridge, MA: Da Capo Press.

Where are they now?

For you regular readers, you know I have commented about the weird thoughts that pop into my head from time to time. Here's the weirdest of all to date...

This morning I wondered where they are...my breasts, that is. Are they just laying somewhere in the pathology lab at ABNW? What do they put them in? How do they label them? I would want to be sure they are writing the report on the correct pair...mine. I mentioned this weird thought to Mary and she admitted that she had had the same thought.

See what vicodin does to the brain? But wait...Mary isn't on vicodin and is having weird thoughts too. Maybe we should be very scared.

Still waiting for the final pathology report. More later.

There's no place like home...

Dorothy was right. There is no place like home. With some comfy new jammies and some vicodin, home is pretty darn good. I got home yesterday around noon, after a stop at Caribou for a latte. I have been attended by Mary and my sister. Very well attended I might add! I can't even move in my chair without one of them wanting to know what I need. I can do some things...the discharge papers say 'activity as tolerated.'

There are so many things about my hospitalization which I want to remember. First was the terrific nursing care that I got. I would think it would be somewhat intimidating to care for an old nurse who is a teacher as well. But I can't say enough about the kind and empathetic nursing care I got. Yes. They do wake you up multiple times for no good reason but that is because they have too. I had one particularly wonderful nurse whose name is Carrie. I will remember her always. She touched my heart as well as cared for my body. She made sure Mary could take care of me and my drains as well. She was great.

I also want to remember the horror of having my dressings taken off for the first time. It was Friday night after all of the visitors went home. Kelly was my nurse and she was on one side of me with Mary on the other. Together they gently removed all of the tape (and there was alot of that...) and took the dressings off. I looked down to see my perfectly flat chest, bruised with betadine and dry blood and 2 giant incisions held together with lots of steri-strips. I sobbed. It was too much for me. Mary just kept whispering in my left ear that it meant life...but I couldn't look. And couldn't look the next morning either. Yesterday afternoon when I got home Mary helped me to get into the shower (isn't a shower a beautiful thing!) and I did look then. And then didn't look too bad. And this is one of the wierd things that I am dealing with. I have never been a woman who has identified herself with her breasts. They were there. I had to buy things to cover them and often wished they weren't there so I could be topless whenever I wanted to. And so now, they're not there and I completely fell apart. I think this must be a part of the grieving process and I would imagine, will get better. We'll see.

On a lighter note. They sent me home with a 'mastectomy vest' which is a very nice stretchy, soft undershirt that has pockets in it for my drains. Since they will be in for another week or so, that is handy. The garment is packed with 2 fake boobs. They are just fiberfill in case you want to wear something that is light. Kaja, who loves soft stuffed toys, now knows the command "Get the boob" and has destroyed one already after carrying it around the house. She is making Mary and I both laugh.

There is one more thing that I want to talk about. I am sorry this is getting so long so stop reading at anytime....

I am so touched and grateful for all of the kind words of support and encouragement. I have been getting email and blog posts from people I don't even know as well as some I haven't heard from in years. I have even gotten some from former students which really amazes me since I don't have the reputation for being the sweetest nursing instructor on the block! Mary and I are both thankful for all of the expressions of support that have come in the form of food! Wonderful comforting chicken dishes, soups and even 'new boobs kugel' from the Goldbergers! When we were hungry yesterday it was just a matter of heating up something delicious in the microwave and even Mary Mohn can do that.... Our home smells wonderful also, of fresh flowers and a baked cake. It is clean (thanks to Pat!) and Mary has her very own white cake to snack on. We are so blessed and so thankful to all of you.

Tomorrow we receive the final pathology report. Dr. Stoller did call late on Friday evening to say that the final pathology report on the nodes was negative. That is such wonderful news! The news tomorrow will be about the tumors themselves. From there, we will learn more about what my future holds. Stay tuned...by then, Kaja will have all of my fake boobs destroyed!

The surgery went well

I am Mary's friend, Betsy. Mary asked me to update her blog because she had her surgery today and can't get to her computer. I suspect if she could have gotten to her computer she would have done it herself!

What a day. After three hours in the Radiation department, and waiting in 4 different waiting areas, they finally took Mary into Pre-Op a little after 3:00 p.m. As you might imagine, our patient was getting a little surly by then -- she was hungry and thirsty and she was just SITTING AROUND. When Mary is ready, she's ready and she was none too pleased to have this portion drag out.

The doctor told us that the surgery would last about two hours -- longer, if there were any complications. Well, she was in surgery EXACTLY two hours. It went without a hitch. The doc took the requisite number of lymph nodes, and found NO CANCER in any of them. That's the best news we could have hoped for. Since they didn't find any abnormal cells in the lymph nodes, chances are the cancer has NOT spread beyond the tumor they saw on the mammogram. She still doesn't know what the next step will be, i.e. if she'll have to have chemo or if she can go without. The doctor said the pathologist will measure the tumor micrscopically so Mary has to wait until the pathology report is in. Unfortunately, the pathology report might not be finished on Friday (she got out of surgery after 6:00 p.m. and it probably was too late for them to turn it around within a day), in which case it will be Monday before she finds out anything else.

Mary came through surgery with flying colors and woke up in recovery asking for Mary Mohn. They made an exception to the rule about not having visitors in recovery and let Mary be there with her for a few minutes. In fact, Mary Mohn was the person who broke the good news to her about the lymph nodes. We were able to spend some time with her in her room this evening and she was doing incredibly well. She wanted everyone to know she was surly, but she wasn't. She says morphine is good. Diet Pepsi is even better. She was comfortable and relieved. She's very, very grateful for her family and her friends and for all of you for caring so much about her.

Mary Mack will be coming home in a day or two and wanted me to encourage all of you to relax and wait until she's home to visit her. If you can't wait, she's at Abbott Northwestern Hospital, Room 3165. If you visit, please be mindful that visits should be short and low key. Send prayers and healing thoughts and don't forget to post comments on this blog.

What should I wear?

What does one wear to their mastectomy? I guess a bra is not necessary...The wierd thoughts and odd commentary that has popped into my brain at times during the last week is amazing to me. Like yesterday when I was on my way to get my haircut and I found myself wondering if this means I can go topless on the beach...

Today is the day and I am not particularly pulled together. I did manage to find my living will and power of attorney, just in case. I am hungry and would like a large latte. I have also been busy cleaning and catching up on laundry. It was also a sleepless night with a 3:30 am pedicure, lots of over night news and 2 crossword puzzles. I gave up on reading. I can't concentrate on anything that I have to comprehend.

We will be leaving for the hospital in a couple of hours. I want Mary to take a couple of 'before' pictures, in case I decide to have reconstructive surgery down the road. I have read all of the emails of support and encouragement. I am touched at what an incredible support system I have, from all parts of this country as well as Norway! With that much good energy supporting me, things are bound to go well.

Thanks to everyone. Take care of Mary Mohn while I am asleep.

A date.

The results of the biopsy on my right breast did not show a malignancy. It did show hyperplasia and some atypical cells in both the duct and lobe. These findings are consistent with a precancerous condition and with some studies reporting up to 50% of these becoming malignant over time (Love, 2005). Dr. Stoller said we could do an open biopsy to find out for sure prior to my surgery if I wanted. That didn't seem to make sense to me. If there is a chance of these things becoming cancerous in my life, why wouldn't I just get rid of them now? So...I am scheduled for a bilateral (that's both sides) mastectomy with sentinal node biopsy for tomorrow, February 15 at 3:00 pm at the Piper Center at Abbott Northwestern Hospital. She is going to treat the right breast as if it is malignant as well. Anybody wear a 36A bra...I've recently purchased some very nice ones!

Some information on lymph nodes. You've got them all over your body. They drain lymph which is a clear fluid that travels through your body's arteries and circulates through your tissues to cleanse them and keep them firm, and then drains away through the lymphatic system. Lymph nodes are the filters along the lymphatic system. Their job is to filter out and trap bacteria, viruses, cancer cells, and other unwanted substances, and to make sure they are safely eliminated from the body. Cancer cells that invade the tissues can enter the lymphatic system where they can then travel all over the body. That is what makes cancer spread from one place to another. That is the big unknown worry with cancer care. Have those nasty little cells jumped into the lymph system and taken a ride.

To try to answer this question, Dr. Stoller will sample my lymph nodes to see if there are cancer cells lurking there. But you have alot of lymph nodes in your chest and breast so to sample the right ones, she will do a procedure called a sentinel node biopsy. I thought the process was interesting. 3 hours prior to my surgery, the radiologist injects radioactive dye into my breasts. When I get to surgery, Dr. Stoller will use a geiger counter to identify which lymph nodes drained the radioactive dye from the breast. These are the nodes that are most likely to hide the cancer cells. These are the lymph nodes that she will remove for pathological examination. While I am still asleep, the pathologist will examine then to see if there are cancer cells in them. If there are not, Dr. Stoller will quit there. If there are, she will take more lymph nodes out. She is going to do this procedure on both sides. After surgery, we will find out if my lymph nodes have cancer in them. If they do, that means there is a chance that the cancer has spread to other parts of my body. If they don't, the chance of spread is less likely. Future care (like chemotherapy or radiation) is determined partly by the examination of the lymph nodes.

So... how am I doing?

Everyone asks that. My quick response is ok. It's also the socially acceptable response. The fact is, this is a tough question to answer. In one moment I feel stong, confident and resilient. In the next, not so much. For example, yesterday I hugged Mary and it popped into my head that these moments might be numbered. What if this hug is one of a finite number that I have left? Then I cry and it passes. Later, the confidence returns and I list all of the reasons why this is going to all be fine: I found it early, it's small, I trust my surgeon, etc. And so the cycle continues. Don't ask me how I am unless you really want to know.

So tomorrow I have a date with my future. I haven't been so anxious for a date since I was on my way to meet Mary Mohn for the first time nearly 11 years ago. Please think of me tomorrow. I have to be there at 1:00 pm to begin the sentinel node mapping.

Reference
Love, S. M. (2005). Dr. Susan Love's Breast Book, 4th Ed. Cambridge, MA: Da Capo Publishing.

No news yet, but...

I don't have any news yet but I got this email this morning from one of my hockey teammates, Amanda. It is regarding legislation to make mastectomies be done on an outpatient basis. While that was something we briefly discussed with the surgeon yesterday, she was pretty clear that she preferred patients remain in the hospital at least overnight to manage their pain. If you are so inclined, take a look at this:

Mastectomy Hospital Bill in Congress
If you know anyone who has had a mastectomy, you may know that there is a lot of discomfort and pain afterwards. Insurance companies are trying to make mastectomies an outpatient procedure. Let's give women the chance to recover properly in the hospital for 2 days after surgery. Mastectomy Bill in CongressIt takes 2 seconds to do this and is very important...please take the time and do it really quick!

Breast Cancer Hospitalization Bill - Important legislation for all women. Please send this to everyone in your address book. If there was ever a time when our voices and choices should be heard, this is one of those times. If you're receiving this, it's because I think you will take the 30 seconds to go to vote on this issue and send it on to others you know who will do the same. There's a bill called the Breast Cancer Patient Protection Act which will require insurance companies to cover a minimum 48-hour hospital stay for patients undergoing a mastectomy. It's about eliminating the "drive-through mastectomy" where women are forced to go home just a few hours after surgery, against the wishes of their doctor, still groggy from anesthesia and sometimes with drainage tubes still attached. Lifetime Television has put this bill on their web page with a petition drive to show your support. Last year over half the House signed on.PLEASE!! Sign the petition by clicking on the web site below. You need not give more than your name and zip code number.

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

Another Biopsy.

I spent most of the day at the Piper Breast Center. They are absolutely wonderful people. Mary and I started out with meeting one of the nurses and then the surgeon (who came to me highly recommended). Dr. Stoller, the surgeon, was terrific. She spend so much time with us discussing all of my options and what could possibly happen next. Since Mary and I had spend so much time talking this weekend, we had a pretty good idea of what we wanted too. I had opted for the mastectomy. Dr. Stoller felt this was a good choice for me as well although she said a lumpectomy would be fine too. The lumpectomy comes with 7 weeks (5 days per week) of radiation) though and I am not interested in doing that. Whether or not I will need chemotherapy is still unclear. Dr. Stoller estimates the tumor size at about 1 cm but can't be sure until after surgery. That measurement is the 'cut-off' for chemotherapy. The size of the tumor is also important in staging which hasn't been done yet because you need to know whether there are cancer cells in the lymph nodes. They are unable to tell that until the lymph nodes are examined by the pathologist. This who this goes along with the surgery. So, I still don't know about the after surgery care.

Unfortunately while we were meeting with her, the radiologist found something in my right breast. Apparently the folks at Allina Woodbury totally missed another 'suspicious area' but this time on my right side. The radiologist had me do a stereotactic biopsy (mooo......) on that area this afternoon. So everything is on hold again, awaiting the results of today's biopsy. I should hear the results tomorrow afternoon.

So, we wait. To know the significance of having breast cancer in both breasts (on not) as well as a surgery date, and long term care. I can't tell you all how much I appreciate the emails and phone calls with words of comfort, support and encouragement. When Mary and I got into the consultation room at the Piper Center this morning, I started to cry. The nature of this became more real to me. We were there to talk about cancer and it is in my body.

Ohmigod...I have cancer!

I worked in the ED today and it was one of those insanely busy winter days. It felt normal in so many ways. Then every once in a while it would pop into my head..."ohmigod. I have cancer!" It stops me in my tracks. I told the physicians I was working with as well as some of the nursing staff that I feel close to. What terrific people I have the pleasure of working with. My friend WAB, called me with a referral to a surgeon at the U of Mn. He had even taken the time to take with on my behalf. I'll be calling his office tomorrow to schedule an appointment with him. I do think it is kind of funny and sort of amazing when someone responds to my news with "you're kidding" like I would. But hearing that a contemporary of yours has cancer hits us hard. It is somehting that happens to others, not those we know and love.


I played hockey last night and our team did great. We won and I managed a shut out. It was really fun to see my family there to cheer me and my team on. Alvin made a very nice sign as well. There's nothing lke sitting through a C3 women's hockey game to show someone you love them!

My team played again this evening and didn't fair as well. We lost. And it was my last game. For now at least. I told my team that after the game and left the arena in tears which lasted most of the way home. It has been so wonderful to play hockey this season. It was something I missed and was really excited to go back, particularly now that I have lost some weight and can move around better. Stickin' Around was a great team to get started with. They are a wonderful group of women. They offered me their support and I know it was a genuine and sincere offer. I will miss them.


I am really looking forward to tomorrow's visit with the surgeon. Hopefully I will have some more understanding into this journey Mary and I will be taking. I just don't cope well with uncertainty. I like knowing what is going to happen, when. That's the primary way I tray to control my world. Mary picked up a book for me today, "Dr. Susan Love's Breast Book." It appears to be a wealth of information divided into the various stages of the entire cancer process. I want to take a look at it tonight to see if there are suggestions about things I should be asking the surgeon. I think I'll take my tape recorder with me. I don't want to miss anything.

More tomorrow.

The Past Week

I decided to start the new year with appointments for my annual physical and mammogram. I didn't think too much of it when I got a call after my mammogram that they wanted to repear some of the x-rays. After the second mammogram, the technician told me the x-rays looked fine but the radiologist wanted to talk with me. I have been a health care provider long enough to know that radiologists do want to meet with people who have normal x-rays. 2 hours after this, I was scheduled for a stereotactic biopsy.

On February 8, I had my biopsy. A stereotactic biopsy is done on a special table that has a hole in it. You lie on you abdomen and drop your breast through the hole. The table is raised up and the radiologist and technicians sit under the table. You can feel what is going on, but you can't see people. I kept thinking about a cow getting milked. It was fast though with the procedure done in just about 15 minutes. Then I waited...for 29 hours to be exact, for the results. Of course prior to the biopsy I did all kinds of reading and learned that 80% of biopsies are benign. Isn't the internet wonderful? You can find out all kinds of things, some of which you didn't want to know.

Thursday night was a sleepless one and I was awake and off to school early. I kept my cell phone close so I wouldn't miss THE call. In the afternoon I went to have the oil changed in my car and yes, that is when my primary care provider called with the results. I felt my stomach sink when I heard her say "the news isn't good." She told me I have invasive ductal carcinoma. I made her repeat the information while I frantically searched the waiting room at Woodbury Autocare for a piece of paper. The other things the path report included was a grade of 3 and a Notthingham Score of 9. The cancer is not yet staged. Apparently that will be done after some additional information. She also informed me that the next step was a visit with a surgeon and told me she would call me back with that information. At about that time, they told me my car was done but I really needed to think about having my transmission flushed. If he only could have understood what that little piece of information sounded like just then!

I got in the car, called Mary and burst into tears. She was at work. I couldn't think of anything else but getting home to the computer so I could start my research. When I got home and sat down to start searching the web I had a weird feeling of 'what do I do now?' enter my head. I had my cell phone on one ear talking with Mary and the home phone on the other calling my sister and Betsy. I also had such a sense of needing to get this all figured out right now.

Mary came home from work and made me leave the computer for a while. By then I had an appointment with one surgeon and was trying to identify a second one. I had about 8 different breast cancer websites open and was clicking back and forth reading and trying to comprehend it all. I was feeling incredibly overwhelmed by it all. She was right. I just needed to 'be' for awhile. We went to dinner and then to my sister's (where my mother, stepfather and niece were having dinner) so I could tell all of the family at once. My sister Pat's friend, Mark was there too, lending his unique sense of humor to the situation (yes. I will ski on your damn race team next year).

Today is a new day and I am no closer to understanding all of it. I can't describe how angry it makes me feel when I think about the fact that I have spent the last year getting myself to a healthier state only to be diagnosed with cancer. My thoughts are scattered and include everything from "this is no big deal" to "what is the payoff on my life insurance." I know where my power of attorney and living will papers are!

I also spent some additional time online and was able to read and understand more clearly. I found a discussion board that I posted a message to and got some wonderful feedback from those who have been there. I have appointments with 2 different surgeons Monday and Tuesday of next week. One is from the Piper Cancer Center in Mpls. and the other with Allina in St. Paul. Hopefully then I will be able to truly comprehend the situation I am in. I will know what kind of surgery (and/or other treatment) I will need and will have some kind of a treatment plan in place.

You all know how controlling I am. You know that I want to have things in order and know what is going to happen when. Not being able to do that at this point is incredibly difficult for me. I am trying to keep perspective and keep life as usual until something different happens.

I am going to play hockey tonight, hoping that I won't take a hard shot to the left breast. It is still a bit sore from the biopsy.

Stay tuned.