Awareness month: Breast cancer

It is October 2014. It is Down syndrome awareness month and it is also Breast Cancer Awareness month. Where do I start????

Lets start with Breast cancer this year, shall we? We all know that breast cancer exists! Every month is breast cancer awareness month. Ever day when I look in the mirror, or take a shower, or glance down, I am reminded how breast cancer has affected not only me, but my entire family. There is no escaping it. But, that doesn't mean I buy into pink.  Some yes, some no. Yes, the pink ribbon has become the symbol for breast cancer, but before you get involved in activities and events promoted by various breast cancer organizations, check out their stats. What percentage of their money raised is actually given to the support of people with breast cancer, or to research for a cure for breast cancer?  How much of the money raised goes into overhead? Just because they have a big name does not make them a good place to put your money. Pink has become a great marketing tool for many organizations and businesses. People think if it's pink, they must be doing good things with that money. Not necessarily true! Do your research, ok? We don't need awareness events, we need research. We don't need "feel good" events, we need research.

Did you know that the survival rate of breast cancer has NOT CHANGED in 20 years???? If the research was being done, this statistic would no longer be true.

 Did you know there are 14 different types of breast cancer?

Did you know that "early detection" of breast cancer is a bit deceiving? Most breast cancers have been there months -or in my case years - before they are actually diagnosed.

Did you know that 76% of women who develop breast cancer have absolutely NO risk factors? All women are at risk!

11% of women diagnosed with breast cancer said pain was symptom. I am one of them. In fact, it was my first symptom. It is pain that lead me to find my lump.

There are approximately 232,670 new cases of breast cancer in women are diagnosed in the US every year, and 2,360 cases of breast cancer in men. Approximately 40,000 women and 430 men in the US die from breast cancer every year. 

While mammograms are helpful in diagnosing breast cancer, the most important thing you can do is know your breasts! Know how they feel and how they look so you are aware of changes when and if they occur. 

What I didn't know, and an update

Just 5 weeks ago, I knew very little about breast cancer.

I knew it killed women, but I also knew some women survived.
I knew there was an inherited form, and that family history is a risk factor.
I knew it was treated with chemotherapy and radiation.

And that, my friends, is all I knew. That is pretty pathetic considering 1 in 8 women will be diagnosed with breast cancer sometime in their life.

ONE IN EIGHT!

You, me, every woman, needs to understand breast cancer. I feel like we're all walking around with a target on our backs, and I didn't zig zag fast enough.

I thought "Breast cancer" is breast cancer. I didn't know there are fourteen different types of breast cancer! I have the most common type: Invasive Ductal Carcinoma, accounting for 80% of all cases of breast cancer, and in the US about 150,000 cases per year are invasive breast cancers.

I didn't know that even though I may have the same type of breast cancer as Susie Q, the genetics of our cancers are very different. This makes our treatment options different, and the list of treatment possibilities is extensive.

I thought, when a person is diagnosed with cancer (any kind) treatment is started immediately. Even Urgently. I had no idea this is absolutely not the case with many types of breast cancer, mine included.

I thought breast cancer meant the woman had to have a mastectomy and chemotherapy. So many women are not only able to keep their breasts now, but they are surviving with their breasts for decades!

I didn't know that cancer is "fed". Cancers are fed by all kinds of different things. My cancer happens to be bed by estrogen and progesterone. (and no, not sugar. And no, don't send me the 'cancer is fed by sugar' stuff anyway because you feel I need some enlightening.)

Here's where I'm at with my cancer:

The last of my tests have finally come back, leaving me more confused than ever. I haven't yet met my oncologist but will on May 1st. At that time we'll go over all of my pathology reports, as well as the results of my Oncotype testing and come up with a treatment plan. I am fortunate enough to fall into a "gray area" group of patients where treatment is pretty much a coin toss as to whether or not chemo is an effective treatment for my cancer, or if my risks are no different if I do radiation only. Leave it to me to have such luck.

I am having a really hard time getting much of anything done in the house. Between dealing with Abel's school issues, and working on getting Audrey's medical appointments completed, and the fact Angela is turning 18 (a birthday which includes a whole stack of paperwork because she will now be a "disabled adult") None of this would be overwhelming to me, except that now I have all my own health issues thrown into the fray. Its all just mentally exhausting, and if I had a hard time getting normal chores done before, now its so much worse. So lots of things are getting done, but not the things right in front of me. I feel a bit inept.

I have been doing a lot of reading and research, talking to other women who have the same type of cancer as me, finding out what they decided for their treatment plan. Now I'm at the point where I just need to walk away. I need to stop reading and stop asking. Next week when I meet with my oncologist I will make a decision and I will not second guess myself. Much. I'm so thankful I have Dean who is so supportive and doesn't want to influence me with what he thinks. "It is your body, and you are the one who has cancer. Whatever you choose to do is what I will support."

I have bad hair. It started thinning when I was in my early 20's. I have a fair amount of gray. If I have to have chemo I want to get better hair out of the deal. This should be a reasonable request, I think. No?

And so, if I'm a bit quiet lately, now you know why. It's not because I'm super busy. Well…I am but I'm not. (if you don't know me personally this may not make sense to you.) For those who have called me with Down syndrome, adoption, or just general parenting related questions, please don't hesitate. I enjoy talking and thinking about something other than cancer. Cancer is not taking over my life.

The Waiting

Sunday

The radiologist had told me we should have the biopsy results by 12:00 on Friday.  Thursday night Dean and I cried ourselves to sleep. Tears of fear. Dean's previous wife, Fae, died from breast cancer in 2001. How could this happen to him a second time? Maybe its not cancer. Maybe its just a benign lump and we can leave it alone?

They told me the results should be in by noon, but if I hadn't heard from them by 1:00 I should call. At 10:30 I picked up the phone, then put it back down. Dean needed to leave for work but he wanted to be home for the results. He waited as long as he could then at 10:30 he left reluctantly. He gave me a hug. There was still some time for denial.

At 10:45 I picked up the phone and dialed. I got the voicemail of the nurse practitioner and left my information. How many other women were calling for their results today? How many women are diagnosed with breast cancer at this one clinic on any given day? On this very day, how many other women were as afraid as I was? How many others were hovering over their phones, waiting?

At 11:00 I called again. The nurse practitioner answered, "Oh, I've been watching for your results from the lab. I'll call you the moment I get them!"

11:35 a call from my mom: Anything yet?

11:50 text from my sister: Do they wait until 11:59???

At 12:30 the phone rang. I knew it was her. I gulped for air.

"Hello?"

"Hi Leah, its N. " She sounded friendly, " We haven't met yet, but I think I passed you in the hallway of the clinic yesterday. I heard all about your family."

"Yes, I'm sure I was hard to miss. I was the one freaking out. Was I still standing or was I on the floor when you saw me?"

She laughed, "No, you were on the way to the conference room with your husband. Dean, right?"

"Yes, Dean."

Oh Lord. She is very friendly. She can't have bad news. She's too nice for bad news.

"Can you verify for me your date of birth?"

Oh…her voice had changed. It was suddenly not so light. Still friendly, but more serious.

I gave her the information she needed and I realized I was holding my breath.

So much trouble breathing lately.

"I'm sorry to say, your biopsy was positive for breast cancer."

And somehow, at that moment, I was ok with this. Well, not ok, but my fear was gone. Now that I knew for sure, I was no longer afraid. My brain kicked in, and I started to ask semi intelligent questions.

What type do I have? I am lucky enough to have two types of cancer: Ductal Carcinoma In Situ (DCIS) and Invasive Ductal Carcinoma (IDC)

What is the treatment? It depends upon the results of the MRI and lumpectomy. It will either be lumpectomy and radiation, or mastectomy and chemotherapy.

How far out can I schedule surgery? The surgeon will discuss that with you but you're a couple weeks out from surgery.

She scheduled me to have a breast MRI on Monday morning, and to meet with the surgeon and/or oncologist (I can't remember which!)  in the afternoon to go over the results.

I hung up the phone and called Dean. I took a deep breath and told him the results.

I had to tell Dean I have cancer.

Then poor Dean had to go back to working, being happy and chipper to his customers,  knowing I have cancer. Knowing lightning found him a second time.

Then I called my sister. And my mom. And then I went into the bathroom, stripped off my clothes and stood in the shower in the hottest water I could tolerate.

I have cancer.

For real.

I stood in that hot water and cried. I didn't ask God why. I didn't ask him how. I just asked him to make it all ok. I told him I didn't have time for this! HE brought these kids to our family, WHY THIS? I begged him to not let me die. I have kids who need me. Dean needs me. And I knew then that I have always known I would get cancer someday. I always knew. I have odd little fears about things I have always kept to myself, like don't stand close to the microwave because those invisible waves scientists say are safe could trigger the cells in my body to go crazy. And here they are. They did it. They went haywire. And now I have to fight them. I have to. There is no choice. Cancer found me.

Over the weekend I had so much to get done, but I couldn't do a thing. All I wanted to do was sleep the weekend away so that Monday would come. Being awake meant listening to my brain screaming "CANCER CANCER CANCER CANCER." I would pick up a shirt to fold, "Oh my God I have breast cancer!" Wiping off the kitchen counters, "I have breast cancer." Holding sweet Audrey. "Cancer!"

Dean walked into the kitchen for something and I hugged him. I clung to him. I whispered into his ear "I can't believe I have cancer."  "I know." he said. "I know", and he held me, and we cried quietly so the kids wouldn't know we were crying.

And he held me while I cried.

So many tears.

If only I could sleep it all away.

I have breast cancer.

I can't believe I'm typing these words right now.

Breast cancer.

In me.

In my breast. The one that is bruised and battered from the biopsy. Several times throughout the weekend I closed the bathroom door behind me and stood before the mirror. There it is. My breast that has cancer in it.

Shock.

Disbelief.

Emotions I have no words for.

Thoughtless thoughts because…because…there is just so much nothingness in my head right now. Numb.

I took the boys to buy shoes. The sales clerk and I exchanged friendly small talk. Suddenly I felt words wanting to come pouring out of my mouth, out of control. "I have breast cancer. I just found out yesterday. Yes. Really." I was shocked at this odd desire to make an announcement. I don't know how I kept the words inside my head. I wasn't even sure they DID stay there. Did I say it out loud? How did I prevent them from spewing their vileness on everyone around me? Where did that come from? Maybe I'm losing my mind now too??? Cancer is already making me crazy. For two years I have been carrying these death-causing cells inside me while they multiplied and did their nastiness to my body, and now the knowledge of them was making me crazy. Thankfully the sales clerk was not exposed to the thoughts in my head and her work day continued on as usual. The boys and I went home and I told Dean what had almost happened. I think he's afraid of me now.

Tonight, Sunday evening, I have diagnosed myself with PTSD.

Meeting with the Surgeon

Monday afternoon

For Christmas Dean had given me a gift card for a local spa. Last week I scheduled myself for a one hour massage and foot scrub. That was before I knew I had cancer. Before I knew that later today I would be meeting with my surgeon and oncologist for the first time.

Today I laid on that massage table, crying silent tears while the massage therapist did her thing.

When my massage was done I didn't feel all tingly like I usually do. My tense muscles didn't feel any different than they did before. Stupid cancer.

I picked up Dean from work and we drove to the breast center in relative silence. I knew what was going through my mind, but what was going through his? Disbelief that he is living through this again? That lighting can, indeed, strike twice?

They called our name and brought us back to a small conference room. "We're going to leave Dean here while we do another ultrasound. The MRI showed another small area we need to take a closer look at."

For real?

Stupid cancer.

The radiologist dug around my breast with the ultrasound probe. Finally she found the spot they were looking for, buried deep in the breast tissue. She studied it carefully for several minutes. "It looks like an intra-mammary lymph node. They are usually nothing concerning, but when you have your surgery we'll probably look at it closer."

From there I was brought to an exam room and a few minutes later Dean was brought in too. Then my surgeon entered and introduced himself. He started with a breast exam. It suddenly occurred to me I will have more breast exams in the next few months than I've had my entire life. The words of my friend came back to me, "Say goodbye to your modesty."

Dr. S. sat down and tried to get to know us a little bit, then finally said he was trying to get an idea where our understanding of biology was. Dean laughed and assured him I probably know almost as much as he does. I laughed, feeling a bit embarrassed. Dr. S said he had gone over the MRI images with the radiologist, along with the new ultrasound of the intra-mammary lymph node, and invited us back to the conference room so we could discuss everything. We were introduced to one of the clinic nurses who would be taking notes during the meeting. Wow..a notetaker? I've been through many very intense meetings with medical specialists before, and never been provided a notetaker. Did I really need that? I almost said, "Thank you, but I don't think we'll need you to take notes." But a tiny voice in the back of my mind stopped me. "For once, let someone else do the work for you. This is your first lesson in accepting help."

I sat back and tried to concentrate on what the doctor was explaining. He stared at the moment of conception, explaining cell biology, mitosis, meiosis, and DNA replication. I wanted him to hurry up and get to the cancer part. Finally he got to epithelial cells, and what goes wrong in their duplication and how they become carcinomas.

I have two types of cancer:

Ductal Carcinoma In Situ, which means the cancer is still within the ducts, and Invasive Ductal Carcinoma, which means the cancer has broken through the lining of the duct and is spreading to other tissues. These invasive cells can travel to the lymph nodes, sending them to other parts of the body.

My cancer is 2 cm, which makes it a stage 1 cancer. However, if at the time of surgery it is found to have spread to my lymph nodes, this will change. 

My cancer is estrogen positive, which means it is estrogen fed. Removing estrogen from my system means cutting off the energy source for this type of cancer. I'll have to take medication for the next several years. The medication turns off the estrogen receptors. It will put me into menopause, or have my ovaries removed and take a different medication. (this is more probable because I have a significant family history of strokes) 

My cancer is HER2 negative. That means it is not producing a specific protein. HER2 positive cancers are much more aggressive than mine.

Twice during the meeting my phone rang. I had to keep it on because Noah was at our house getting the kids off buses. Twice there were calls because of issues at home. It gave the doctor a good sense of what our life is like, and how I'm always "on call". 

At some point the doctor asked me, "When you were told you had cancer, what was the first thought that came to mind?"

I started to cry. One of those cries I couldn't really control. Finally I said, "The first thing I thought was, "I don't have TIME for f-ing cancer." He looked me in the eye, "I'm glad to hear that. I'll tell you that over the years I have learned some things. Everyone has instinctual responses. I've learned that for people who's first thought is something related to death and dying, they have a much more difficult time with treatment, no matter what the treatment, than those who are a bit more stubborn about things. You'll need to learn to take care of yourself, but I think this will be just a speed bump in your life, and nothing more."

He continued to explain all the different surgical options that go along with various stages of breast cancer. Right now I will need only a lumpectomy followed by six weeks of radiation along with several years of medication to block the estrogen receptors. A few weeks of treatment, and then I'm done. With this protocol my cancer has a 5% chance of recurrence. 

And  here is where I get irritated with cancer again. I had already decided I would have a mastectomy in a few months, but the surgeon assured me this is not necessary with this type of cancer, that it doesn't change the outcome. So even though I have breast cancer, I don't get to buy the t-shirt that says, "Yes they're fake, the real ones tried to kill me." This should be a good thing, I know. But my mind is doing funny things right now. 

Nope, I don't even get a boob job out of the deal! The Dr. explained I may have some shrinkage on one side from the radiation, but that I don't really need a breast lift at this time because I have no sagging. Ok, normally I would have taken this as a compliment, but in this context I was a bit annoyed. "What? I don't even get a boob job out of the deal?"

And yes, I know more about boob jobs than most who haven't  had it done. I have done drains and a 27 inch incision from hip to hip. I know I'd rather have a mastectomy and reconstruction done preventatively than in a more urgent manner. 

Well, because I have breast cancer, I can talk to a plastics person anytime I want, and I could even get a boob job if I wanted. Its just part of breast cancer. But I think I'm pretty lucky I get to keep my natural boobs and will leave them alone. However, I reserve the right to change my mind.

When the meeting was done I was given a 3-ring binder full of information, including the contact information for everyone in the clinic and what their roll is. Its almost like they've done this before. I was also given the 4-5 pages of notes the nurse had taken for me. 

On Weds, April 2nd I'll be having a sentinel node biopsy followed by a lumpectomy. This is outpatient surgery and I'll only be at the hospital a few hours. I was told, "Because of the size of the lump and its location, the incision will be small and you'll be back in the trenches the next day without restrictions."

Really? With Dean sitting right there the dr. couldn't even give me two days of "stay off your feet and rest?" 

Stupid cancer. 

Making tough decisions is tough

When I was diagnosed with breast cancer I was a little bit excited about the opportunity for a boob job. Not that a double mastectomy is any cake walk, but I was trying to find the positive…if there is a positive in having breast cancer.  Then I found out I didn't need to do that for this type of cancer and was relieved I didn't have to go through that surgery. Its a big deal!

Several weeks later my oncotype came back, giving my my risk of recurrence which was somewhere around 25%…too high to ignore which is why together Dean and I opted for chemotherapy. Still, there is no real answer as to whether or not chemo will make a difference in my recurrence risk. It was a coin toss, really, and we chose to toss the coin. We chose to use whatever weapons were made available to us.

I have one more test left to come back, which is genetic testing. This is important not only for me, but for other members of my family - like my sisters and nieces - so they can make healthcare decisions for themselves. If my genetic testing comes back saying that I have the BRCA 1 or 2 gene, then I'll be having a mastectomy in September. If I don't have either of the genes I'll be having radiation starting sometime around the end of August.

And here is where my thought process has changed.

Chemo sucks. Some people think "Oh she only did four rounds, that's not so bad!" In reality, there are only four rounds of this combination given because it is HARD on your system, and then you need a full 21 days for your body to recover in between rounds. This has been really hard. I knew it would be hard. I "volunteered" for this because I don't ever want breast cancer again and Dean and I both wanted to do whatever we could to prevent just that.

Now I'm almost done. I have one round left. After each one, once I get to about day 10 I think, "There! That's done! I can survive 3, 2, 1 more of that." But really? Honestly? The depression that hits on about days 5-7, when I am so sick I am not functional at all, is just too much for me.  I cry. I cry a lot. I mostly cry alone in bed or in the shower so I don't bother Dean or freak out the kids. And I whine, probably a lot more than I realize. I cannot begin to explain to you what "bone pain" is like. It is like my bones are going to explode from the pressure inside and I would truly feel relief if they did just that. I can tell you I have never before felt "fatigue" to the level I feel after chemo. How do I describe the feeling that my arms and legs have been filled full of lead and it is all I can do to stand up from a chair and walk from the living room to the kitchen, and then think about going back. The damage done to my colon is likely permanent. As of right now the only way I can be more than 50 ft from a bathroom is if I haven't eaten for several hours. I could go on an outing and be fine without any problems, or I could need a bathroom every 15 minutes without enough time to walk 50 feet to get there.

I know that I could go 2, 5, 10, 20, 30 years and never develop breast cancer again, or I could hear those words "I'm sorry, you have breast cancer" just one year down the road. What if I developed a different type of breast cancer? (this happens quite frequently!) What if its not caught in time and it gets to my lymph nodes? That becomes a whole different type of situation.  I don't EVER want to do this again, and I don't ever want the risk of HAVING to do it again. I don't want to put my kids through it and I don't want to put Dean through it.

I don't know what to do. I think I want them off. Although a mastectomy does not change my survival rate, it does reduce my risk of recurrence. I want ZERO risk of recurrence but unfortunately that is just not possible. Even a mastectomy leaves some amount of breast tissue where cancer can develop. I hate not knowing what to do. Every time I ask God for clarity about something along this journey I find myself in some "gray area" group, where a coin toss is the only way to make the decision. I'm not seeing clear answers and I don't know that I trust myself to make the "right" decision. Maybe there isn't a RIGHT decision. Maybe there is only the right way for ME.

Breast Cancer Awareness 2018

It's been four and a half years since I was diagnosed with breast cancer. It seems like forever ago, and yet it seems like yesterday, all at the same time. Life is good!!! I am approaching the 5 year mark - a very important milestone in the life of a breast cancer patient! At 5 years, I can get life insurance!!! Well, that and statistically one's risk of recurrence decreases significantly.

So far I am still NED = No Evidence of Disease. You see, with breast cancer, there is no such thing as "cancer free", because it takes only ONCE undetectable cell to cross the lymph system, to spread through your body. Instead we are labeled "NED", because there is no detectable cancer found. Last spring I was all freaked out and convinced I had developed lymphoma as a result of chemo. My Oncologist ordered a PET scan, and all was well. That scan made me feel SO much better, knowing there was nothing hiding anywhere. At least nothing any scan could pick up.

So here I am.

I want to go back a bit, and share some things about cancer that I never did before. I don't know if the average person understands how devastating breast cancer can be. This year, after much thought and prayer, I have finally decided to share pictures. Not just pictures of my smiling self, but pictures of the effects of surgery. Yes, I'm going to show you pictures of my breasts, both my old and my new. I don't even remember my old breasts anymore. I don't remember how they felt in my hands or on my body. My new ones don't feel like real breasts. I can feel the implants inside them, and they cause me a few (minor) problems here and there, which I like to make jokes about.

If you are here for the first time, THIS LINK will take you to the post I wrote about the day I was diagnosed. So far in my 51 years, that was the darkest day of my life.

FIVE YEARS NED!!!!

I wrote the post below five years ago!!! With breast cancer, I will never hear the words, "You are cancer free." That is because breast cancer only needs one teeny, tiny cell to find its way into another part of the body. Instead, we are told we are "NED", which means "No Evidence of Disease". Two weeks ago I had my five year check up and I am still NED!!! Five years is a big milestone in the world of breast cancer, and it is a milestone we celebrated. Here are the words I wrote all those years ago, when I told the world for the first time that I had cancer. It is a day that will be very close to me forever. It is the day my life changed forever. I will never move away from cancer. I will always have fear. But today...today I embrace five years!

...............................

March 24, 2014


Thursday

Audrey saved my life.

My new daughter, who we just brought home, saved my life.

I had to have a physical for my adoption. This is standard procedure and required. I've had the same physical four times now, as every adoptive parent does. My doctor reminded me I was due for my annual mammogram. I scheduled it for a few weeks later then, in the excitement of getting ready to travel I missed the appointment.  I would have forgotten again but this time Dean reminded me. His previous wife had breast cancer and he wasn't happy with me for skipping a mammogram last year.

Dean insisted on coming along for my 9:00 appointment then we would get a coffee afterward before dropping him off at work.

 First I had the mammogram done. Nothing like having your breast pulled down all the way from your chin!!! The imaging screen was behind me, out of view. When all the images were taken the tech put them up on the screen so she could make sure they were good images and nothing needed to be re-done. I turned around to see them myself.

Suddenly I couldn't breathe.

This didn't look like my mammogram from 2 years ago. No. No it was very different.

The radiology tech said she needed to have the radiologist review the films. When she returned she told me I'd be having an ultrasound. I was brought to a little waiting area while they got the ultrasound ready.

There were a couple other women waiting with me, all of us in our white, scratchy clinic robes. I wondered if they were just getting screened. I wondered what they knew about their breasts. I wondered if they were as scared as I was. 15 minutes ago I wasn't scared, now I was petrified.

"Leah?"

The tech put the wand to my breast. I asked her to turn the screen a bit for me so I could see. I was in school for a year for sonography. I didn't finish (we adopted Asher instead) but I was there just long enough to know what I was seeing on the screen. "That's not a cyst." I said.

In my head I was screaming, "Oh my GOD that is NOT a cyst. I know that is not a cyst."

Breathe Leah. Just breathe.

I went back to the little waiting area again, but this time I was alone. There were no other women waiting because they had their mammograms and got to go home.  It was only a minute before the nurse came back to get me. "Do you have anyone with you today? The radiologist would like to talk to you."

I wanted to vomit. They don't ask to talk to you, and if you have someone with you, when everything is all good. This was not all good. I could feel it, all the way in my bones. Every cell of my body screamed "RUN!"

I waited in a small conference room while the tech left to retrieve Dean from the lobby. I noticed a box of tissues on a nearby desk and quickly grabbed a handful, shoving them into the pocket of my scratchy robe.

Dean came in and sat down by me.  I couldn't talk. I wanted to vomit. I was afraid if I opened my mouth some kind of floodgates would open and the result would be really bad. And then the radiologist, in her white lab coat, stood before us, the tech at her side with her blonde pony tail and her pink and purple scrubs.  "I've reviewed your mammogram and ultrasound. You do have a mass there that is small, but it needs to be biopsied."

That is when my world started spinning.

I buried my face in Dean's chest and sobbed.

But see...here is where the doctor didn't follow the script that was in my head. It was at this point she was supposed to say, "This is just a precaution. Chances are this will come back fine."

But she didn't say that. She just stood before us, waiting patiently while I composed myself. She said nothing.

She told us we would have the results back by noon tomorrow (Friday).

The radiologist and tech left to prepare the procedure room while Dean and I sat and waited.

"I can't have cancer." was all I could whisper. It was all I could think.

Couldn't this biopsy wait until Monday? Let me digest this for the weekend? No...no...they do not waste any time here. This is a breast clinic and this is what they do. There would be no waiting.

Just a few minutes later they came back to get me. Dean disappeared to the lobby while I laid down on the exam table. The radiologist put the ultrasound wand to my breast and I stopped her. "You see these all the time. What do you expect these biopsies to show?"

She took a breath. Her words were gentle and soft, but very firm, very clear. "I am honest with all my patients. You're scared and you want to know so there is no reason for me to be vague. I expect this biopsy will show that you have cancer."

"I need a number. Can you give me a percent?"

"Well...I would say I'm 95% sure."

And then I cried. One of those silent cries where you want to say something, I needed to say something, but my throat was too tight to talk and...again...I couldn't breathe enough to talk.

"I'm ok. I'm ok. I'm ok....." I said. While I tried to breathe.

And then I told her why I was upset. About our family. Audrey. Everyone. I can't have cancer.

I cried some more.

Finally I said, "Ok...lets get this done."

The doctor was so patient with me. How many times has she had a freaked out woman on this same table asking the same questions?

She put the wand back to my breast and I told her what I understood of the image on the screen. "You would have made a good sonographer." she said.

She painted my breast with antiseptic. She explained she would be inserting a needle with novocaine (or some other numbing stuff, I don't even remember.) and it would hurt a little. It did hurt, but not as much as my tooth last month. Then she inserted a second needle for deeper numbing behind the lump.

"Next I'm going insert a special needle. When I'm in the right position I will activate it. It makes a loud clicking noise but it should not hurt. If it hurts please tell me." The whole procedure looked just like this.

Courtesy Mayo Clinic Health Library

I waited for it to hurt. My whole body tensed up with the waiting.

CLICK

I tried not to jump but I did anyway. It sounded like a staple gun. There was a small tugging sensation, but no pain.

"I need to do three more just like that. I will tell you each time so you don't jump."

I asked her to show me the sample that was taken. It was about an inch long, and a thick spaghetti noodle. "There's my cancer." I thought.

I started taking deep, cleansing breaths like when I was in labor. Long, deep breaths to take me somewhere else. To a beach, with sunshine. Anywhere but here.

"Ok. Here is the next one."

CLICK

I exhaled. I didn't know I was holding my breath.

"Alright. This will be the third. I'm activating now."

CLICK

"Ouch. That one hurt a little bit. Not bad. Like a pin prick."

"That was the deepest one. This last one you should not feel at all. Activating now."

CLICK

"There. That was the last one. Now I'm going to place a small metal clip, about the size of a grain of rice, into the lump. This marks it for future reference so if a new lump were to appear we know this is the original one."

The tech bandaged me up. Then the doctor asked if I have a picture of my kids. I showed the pictures I took back in August, then of Audrey on the day she was removed from the institution. Skinny, with her head shaven and in ratty clothes. Then I showed her a recent picture. "She's beautiful." we said together.

"This is a small lump. I can't say for sure until we have the biopsy results back, but typically this is treated with a lumpectomy and 6 weeks of radiation. Very rarely is chemotherapy needed for this type of lump. Six weeks of radiation won't stop your life. You'll be a bit tired, but it doesn't knock you down like chemo does. I expect that you'll be meeting with the oncologist and surgeon on Monday. But sweetie, you are going to be ok. This will likely show a very slow-growing cancer. Its gonna be ok! YOU are going to be ok."

I hung onto those words. No, I clung to them as if they were a life-ring tossed to me while I bobbed and floundered in the ocean.

They handed me a bright yellow sheet of paper with post-biopsy wound care instructions, then walked me back to the small waiting area. There were three other women waiting. I sat down in a chair in the corner. I started to cry. I couldn't stop. The tears just kept coming. Here were three women, waiting for their own  mammograms, and here I sat, golden ticket in my hand, sobbing. One woman wiped a tear from her eyes while the other two hid behind their magazines. I realized I was freaking them out and tried to compose myself. I picked up a magazine. What does it say? I couldn't really focus on the words or content. There is a puppy in the picture. Cancer. Do I have cancer? I don't like how the room on this page is decorated. What will the biopsy say? I couldn't concentrate on anything but the words screaming inside my head.

Yet another tech came to get me for another mammogram. This one is needed to make sure that little metal clip is in the right place. As she started to position my breast on the plate, my whole body started to tremble. Like I was freezing only I was dripping with sweat. "I need to sit down." I said, and she quickly moved a chair to me. Apparently I was a bit pale. I just needed a minute. Just a minute. Why was I shaking all over? I realized I was a bit shocky, probably from being really tense about feeling pain during the biopsy. Probably from just being told I have cancer.

I needed to talk to Dean. He didn't yet know what the doctor said in answer to my questions. He didn't know the doctor said this was going to show I have cancer.

We took the couple of mammo films that were needed and I was finally allowed to get dressed. I got into the changing room and pulled out my phone to text my sister. My hands were shaking so bad I dropped my phone twice. I sent her some garbled text about "its not good."

I walked to the lobby and spotted Dean. He came to meet me as my phone rang. It was my sister. "I can't talk now." I said, and hung up on her. I couldn't breathe. I was starting to hyperventilate. I wanted to run..run away...I felt trapped. "Get me out of here." I mumbled to Dean. Really, I needed him to lead me because I didn't know where to go because I couldn't think.

We left the lobby of the breast clinic, and the eyes of others waiting, and stepped into the bigger, main lobby of the clinic. I lost it. Never in my life have I cried so hard. Dean just held me as I sobbed. I felt my legs give out under me and Dean held me up. Through choking breaths I told him what the doctor said. That she expected this to be cancer. "I can't have cancer!" I cried. I cried so hard. Dean cried with me and held me, there in the lobby of the breast clinic. And I became aware of women coming off the elevators, moving into and out of the clinic, going about their business, seeing this woman freaking out and knowing in an hour that could be them. Or for some, that was them just months ago and they know. They know the shock. The disbelief. I didn't want to be part of them.

Finally, after several minutes, I was able to catch my breath. Everything about today was about breathing. It was so hard to breathe all day. I had to call my sister back. I looked at my phone. A little over an hour.  In one hour I had a mammogram, and ultrasound, a biopsy, and found out I probably had cancer. It was only 10:30 a.m.

Yesterday I was fine, today I have cancer.

Breast Cancer and choosing treatment

I walked into the oncology clinic and found it hard to resist the urge to turn and walk back out. Why is this even part of my vocabulary? To the left: the waiting room. To the right: patients in chairs getting their chemo. I checked in at the desk, filled out the necessary forms then buried my nose in my phone. I didn't want to look around. Everyone in the waiting room was sick, or waiting for someone who was sick. All these people have cancer? How many people around the world, on any given day, are having chemo?

I should not be here. I don't want to be here. Never in my life have I been in such a depressing waiting room. Wait, yes I have….lets not go there.

I normally have very low blood pressure, around 75/60 is pretty typical for me. But today? 130/90. It made me cry. Why was I crying? Because it was a sign I was letting cancer get to me and I hate that I'm letting it get to me. 

Today I wanted guidance.

I wanted to meet with my oncologist and be told "All your tests say X, and so the treatment will be ….". 

I did get guidance. My doctor was compassionate, caring and exceptionally patient, filling me with information and understanding of all the tests that have been done. 

We know I need to have my ovaries taken out. My cancer is estrogen +, which means estrogen is what feeds it. Most women can take estrogen blocking drugs, like Tamoxifen, to manage that. Unfortunately I can't take that medication. Instead I'll have my ovaries removed. But since there is still estrogen in the body I will take a different drug that is not as strong. I will also have to take drugs to improve my bone density since it causes depletion of calcium, especially being put into instant menopause. 

I am young for this type of cancer. I need to have genetic testing done to make sure I don't have BRCA 1 or 2, which are inherited forms of breast cancer. If I have either of the genes I will have a double mastectomy done. If not, I will leave them alone. Although my breasts are the only feature on me that I actually like, I'm not that attached to them. 

Now for my risk of recurrence. 

Whether or not chemo will affect my risk of recurrence is a coin toss. (read about the Oncotype test here) I'm in that 'intermediate' group of women who scientists don't really know if the benefits of chemo are worth it. The decision of whether or not to fill my body with poison is up to me. 

Because I can't take the estrogen blocker Tamoxifen, my risk of recurrence doubles, putting me somewhere around 25% chance of developing breast cancer again. 

1 in 4. 

Since my original odds were 1 in 8, just like the rest of the world, I have just doubled my risk from the general population. And since I don't really do very well when the odds are not in my favor, I want to treat this as aggressively as possible.

Dean and I have talked, and I have talked with my mom, and we all agree that if I don't do chemo and go on to develop cancer again down the road, I will wish I had done chemo. As it is, I will spend the rest of my life waiting to hear the words "You have cancer" again.

I'm pretty sure this is probably one of the most difficult decisions I've had to make in my life. 

And so it is decided I will start chemo next week. I'm lucky. So far I get to keep my breasts. 

We're dealing with it.

Breast Cancer - Awareness and all that

October is Breast Cancer awareness month. It is also Down syndrome awareness month, which we celebrate all month long here. But breast cancer? Yeah, not celebrated quite so much.

In the next few posts (because I intend to write a few. Getting them posted may be a whole different thing. LOL) I am going to tell you about my true feelings about breast cancer, where I am mentally and physically. These posts may give you the impression I am a survivor basket case. Before you read any further  I  need you to know I don't spend my days wallowing in a pit of "Oh my God,  I had breast cancer. Poor me!" It is just here with me. Every day. Every single day. This month I'm going to show you why. 

Are you aware?

October is a big month in our house. It is Down Syndrome Awareness month as well as Breast Cancer Awareness month.

Tell me, are you AWARE of Down syndrome? If you're reading here, I'm sure that you are. Enough of awareness, what we need is acceptance. Your acceptance tip for today is this: Accept that when you say, "I just hope it's healthy" that having Down syndrome doesn't make a baby unhealthy. It makes them just one chromosome different than you.

Now lets talk about breast cancer awareness. Do you know it exists? I'm pretty sure you have to be living under a rock if you don't. I see all the "secret" memes go around social media, "I like to hang mine on the back of a chair." which is supposed to somehow raise your knowledge about breast cancer. How does wearing a pink ribbon on my lapel increase your knowledge? It doesn't. So I am going to go out on a huge limb here and talk to you about the realities of breast cancer. Here is my real life breast cancer experience from today:

I was by myself (gasp!) in a new, local sandwich shop; a bit on the upscale side because I was giving myself a little treat. There were a lot of local moms there, all dressed in their labels and high price tags. I wanted to stick out my tongue and say, "You know in ten years you're going to be sorry you wore those shoes." and then kind of wanted to hide in my Gloria Vanderbilt stretch denim jeans and a top that suddenly felt like a gunny sack. It was in that moment that I decided I might like to give Stitch Fix a try.

I sat down at my computer and scrolled over the informational parts of the website. I entered my name, email address, etc. Then it was time for the style profile.

Date of Birth
Height
Weight
Bra Size

BRA SIZE????

This is where you should hear the sound of a record player needle scratching to a stop on your favorite vinyl album.

There is no place to select, "I have no boobs".

There is also no place to enter, "I have tissue expanders that feel like cement blocks. I'm pretty sure they are size 34FF."

If by chance I could wear a bra, if I wanted to wear a bra, I can't even guess at it's size. I have rolls and creases, bulges and scars in places they shouldn't be, making wearing a bra impossible until after my next surgery.

So there you go. The next time you get to fill in the little box that says, "Bra size" you can count your blessings. Someday, when its a bit more removed, I may post a picture of what my chest looked like at various stages of the reconstruction process. Now THAT would be awareness!

Remember that one time when I had cancer?

Two years ago today I posted this. Its been months since I've read it, because I cannot read it without tears stinging my eyes. I remember that person. The one who was so scared and couldn't breathe for what seemed like days. I remember the way the words, "I expect this to show you have cancer" cut through the air like a razor blade. I remember trembling in a way I didn't know was humanly possibly and being unable to make it stop.
Two years. I'm a different person now. I am a woman who survived cancer and it changes you. Cancer made me stronger in some ways, and weaker in others. It made me more compassionate and willing to step out and be kind to others in a way I that had never occurred to me before. Before cancer. My life is now "before cancer" and "after cancer".  If you haven't had cancer you won't know what I'm talking about, and may accuse me of being a bit dramatic. You don't know. You can't know. I chose to share my story with you anyway. A story which prompted many of you who had been stalling to get your mammograms done. (and two of you being diagnosed with cancer!)

So, here it is. My words from two years ago, from that time I found out I had cancer.
*********************************************************

Thursday

Audrey saved my life.

My new daughter, who we just brought home, saved my life.

I had to have a physical for my adoption. This is standard procedure and required. I've had the same physical four times now, as every adoptive parent does. My doctor reminded me I was due for my annual mammogram. I scheduled it for a few weeks later then, in the excitement of getting ready to travel I missed the appointment.  I would have forgotten again but this time Dean reminded me. His previous wife had breast cancer and he wasn't happy with me for skipping a mammogram last year.

Dean insisted on coming along for my 9:00 appointment then we would get a coffee afterward before dropping him off at work.

 First I had the mammogram done. Nothing like having your breast pulled down all the way from your chin!!! The imaging screen was behind me, out of view. When all the images were taken the tech put them up on the screen so she could make sure they were good images and nothing needed to be re-done. I turned around to see them myself.

Suddenly I couldn't breathe.

This didn't look like my mammogram from 2 years ago. No. No it was very different.

The radiology tech said she needed to have the radiologist review the films. When she returned she told me I'd be having an ultrasound. I was brought to a little waiting area while they got the ultrasound ready.

There were a couple other women waiting with me, all of us in our white, scratchy clinic robes. I wondered if they were just getting screened. I wondered what they knew about their breasts. I wondered if they were as scared as I was. 15 minutes ago I wasn't scared, now I was petrified.

"Leah?"

The tech put the wand to my breast. I asked her to turn the screen a bit for me so I could see. I was in school for a year for sonography. I didn't finish (we adopted Asher instead) but I was there just long enough to know what I was seeing on the screen. "That's not a cyst." I said.

In my head I was screaming, "Oh my GOD that is NOT a cyst. I know that is not a cyst."

Breathe Leah. Just breathe.

I went back to the little waiting area again, but this time I was alone. There were no other women waiting because they had their mammograms and got to go home.  It was only a minute before the nurse came back to get me. "Do you have anyone with you today? The radiologist would like to talk to you."

I wanted to vomit. They don't ask to talk to you, and if you have someone with you, when everything is all good. This was not all good. I could feel it, all the way in my bones. Every cell of my body screamed "RUN!"

I waited in a small conference room while the tech left to retrieve Dean from the lobby. I noticed a box of tissues on a nearby desk and quickly grabbed a handful, shoving them into the pocket of my scratchy robe.

Dean came in and sat down by me.  I couldn't talk. I wanted to vomit. I was afraid if I opened my mouth some kind of floodgates would open and the result would be really bad. And then the radiologist, in her white lab coat, stood before us, the tech at her side with her blonde pony tail and her pink and purple scrubs.  "I've reviewed your mammogram and ultrasound. You do have a mass there that is small, but it needs to be biopsied."

That is when my world started spinning.

I buried my face in Dean's chest and sobbed.

But see...here is where the doctor didn't follow the script that was in my head. It was at this point she was supposed to say, "This is just a precaution. Chances are this will come back fine."

But she didn't say that. She just stood before us, waiting patiently while I composed myself. She said nothing.

She told us we would have the results back by noon tomorrow (Friday).

The radiologist and tech left to prepare the procedure room while Dean and I sat and waited.

"I can't have cancer." was all I could whisper. It was all I could think.

Couldn't this biopsy wait until Monday? Let me digest this for the weekend? No...no...they do not waste any time here. This is a breast clinic and this is what they do. There would be no waiting.

Just a few minutes later they came back to get me. Dean disappeared to the lobby while I laid down on the exam table. The radiologist put the ultrasound wand to my breast and I stopped her. "You see these all the time. What do you expect these biopsies to show?"

She took a breath. Her words were gentle and soft, but very firm, very clear. "I am honest with all my patients. You're scared and you want to know so there is no reason for me to be vague. I expect this biopsy will show that you have cancer."

"I need a number. Can you give me a percent?"

"Well...I would say I'm 95% sure."

And then I cried. One of those silent cries where you want to say something, I needed to say something, but my throat was too tight to talk and...again...I couldn't breathe enough to talk.

"I'm ok. I'm ok. I'm ok....." I said. While I tried to breathe.

And then I told her why I was upset. About our family. Audrey. Everyone. I can't have cancer.

I cried some more.

Finally I said, "Ok...lets get this done."

The doctor was so patient with me. How many times has she had a freaked out woman on this same table asking the same questions?

She put the wand back to my breast and I told her what I understood of the image on the screen. "You would have made a good sonographer." she said.

She painted my breast with antiseptic. She explained she would be inserting a needle with novocaine (or some other numbing stuff, I don't even remember.) and it would hurt a little. It did hurt, but not as much as my tooth last month. Then she inserted a second needle for deeper numbing behind the lump.

"Next I'm going insert a special needle. When I'm in the right position I will activate it. It makes a loud clicking noise but it should not hurt. If it hurts please tell me." The whole procedure looked just like this.

Courtesy Mayo Clinic Health Library

I waited for it to hurt. My whole body tensed up with the waiting.

CLICK

I tried not to jump but I did anyway. It sounded like a staple gun. There was a small tugging sensation, but no pain.

"I need to do three more just like that. I will tell you each time so you don't jump."

I asked her to show me the sample that was taken. It was about an inch long, and a thick spaghetti noodle. "There's my cancer." I thought.

I started taking deep, cleansing breaths like when I was in labor. Long, deep breaths to take me somewhere else. To a beach, with sunshine. Anywhere but here.

"Ok. Here is the next one."

CLICK

I exhaled. I didn't know I was holding my breath.

"Alright. This will be the third. I'm activating now."

CLICK

"Ouch. That one hurt a little bit. Not bad. Like a pin prick."

"That was the deepest one. This last one you should not feel at all. Activating now."

CLICK

"There. That was the last one. Now I'm going to place a small metal clip, about the size of a grain of rice, into the lump. This marks it for future reference so if a new lump were to appear we know this is the original one."

The tech bandaged me up. Then the doctor asked if I have a picture of my kids. I showed the pictures I took back in August, then of Audrey on the day she was removed from the institution. Skinny, with her head shaven and in ratty clothes. Then I showed her a recent picture. "She's beautiful." we said together.

"This is a small lump. I can't say for sure until we have the biopsy results back, but typically this is treated with a lumpectomy and 6 weeks of radiation. Very rarely is chemotherapy needed for this type of lump. Six weeks of radiation won't stop your life. You'll be a bit tired, but it doesn't knock you down like chemo does. I expect that you'll be meeting with the oncologist and surgeon on Monday. But sweetie, you are going to be ok. This will likely show a very slow-growing cancer. Its gonna be ok! YOU are going to be ok."

I hung onto those words. No, I clung to them as if they were a life-ring tossed to me while I bobbed and floundered in the ocean.

They handed me a bright yellow sheet of paper with post-biopsy wound care instructions, then walked me back to the small waiting area. There were three other women waiting. I sat down in a chair in the corner. I started to cry. I couldn't stop. The tears just kept coming. Here were three women, waiting for their own  mammograms, and here I sat, golden ticket in my hand, sobbing. One woman wiped a tear from her eyes while the other two hid behind their magazines. I realized I was freaking them out and tried to compose myself. I picked up a magazine. What does it say? I couldn't really focus on the words or content. There is a puppy in the picture. Cancer. Do I have cancer? I don't like how the room on this page is decorated. What will the biopsy say? I couldn't concentrate on anything but the words screaming inside my head.

Yet another tech came to get me for another mammogram. This one is needed to make sure that little metal clip is in the right place. As she started to position my breast on the plate, my whole body started to tremble. Like I was freezing only I was dripping with sweat. "I need to sit down." I said, and she quickly moved a chair to me. Apparently I was a bit pale. I just needed a minute. Just a minute. Why was I shaking all over? I realized I was a bit shocky, probably from being really tense about feeling pain during the biopsy. Probably from just being told I have cancer.

I needed to talk to Dean. He didn't yet know what the doctor said in answer to my questions. He didn't know the doctor said this was going to show I have cancer.

We took the couple of mammo films that were needed and I was finally allowed to get dressed. I got into the changing room and pulled out my phone to text my sister. My hands were shaking so bad I dropped my phone twice. I sent her some garbled text about "its not good."

I walked to the lobby and spotted Dean. He came to meet me as my phone rang. It was my sister. "I can't talk now." I said, and hung up on her. I couldn't breathe. I was starting to hyperventilate. I wanted to run..run away...I felt trapped. "Get me out of here." I mumbled to Dean. Really, I needed him to lead me because I didn't know where to go because I couldn't think.

We left the lobby of the breast clinic, and the eyes of others waiting, and stepped into the bigger, main lobby of the clinic. I lost it. Never in my life have I cried so hard. Dean just held me as I sobbed. I felt my legs give out under me and Dean held me up. Through choking breaths I told him what the doctor said. That she expected this to be cancer. "I can't have cancer!" I cried. I cried so hard. Dean cried with me and held me, there in the lobby of the breast clinic. And I became aware of women coming off the elevators, moving into and out of the clinic, going about their business, seeing this woman freaking out and knowing in an hour that could be them. Or for some, that was them just months ago and they know. They know the shock. The disbelief. I didn't want to be part of them.

Finally, after several minutes, I was able to catch my breath. Everything about today was about breathing. It was so hard to breathe all day. I had to call my sister back. I looked at my phone. A little over an hour.  In one hour I had a mammogram, and ultrasound, a biopsy, and found out I probably had cancer. It was only 10:30 a.m.

Yesterday I was fine, today I have cancer.

The Cancer Coaster

I wanted to go all this week without posting about cancer. I really didn't want to think about cancer at all, except that's hard because certain parts of my boob remind me several times per day that it exists. Since I'm writing about this journey for more than just myself, I think its important to acknowledge this aspect of cancer.

Cancer causes crazy.

Cray cray.

Crazy pants.

Crazy Crackers.

Yes, cancer causes people to become all of those things. There is no telling when I could go from a sane, rational mother of 5 to Crazy Crackers mom who can't remember what she did eight seconds ago. (and, I'm sorry Noah, I have no clue what I did with your birth certificate that I just saw two days ago. The air ate it. I will get you a new copy.)

Then there are the strange, "out of body" type fits of irritation that are not like me. I go online and find that other women have described the same things, and I feel slightly better that maybe I'm NOT crazy. Perhaps, just maybe, I'm a little stressed? Its possible.

 Last week while I was still waking up from anesthesia, I found out my lymph nodes were cancer free. This is a major piece of information because it means I don't have to have chemotherapy, just radiation only. Then two days later my surgeon called me at 8:00 pm. He wanted me to have a good, worry-free weekend, so called to tell me that he did, indeed get all the mass out of my breast. (It has clear margins, for those who know the lingo.) I was thrilled. No chemo for me, for sure! YAYAYAY

Tomorrow morning I meet with my surgeon for a one-week follow up, and to go over the final pathology results. I was just getting ready for bed, looking forward to this early appointment because it won't mess up my whole day. And then suddenly I remembered something! Just before surgery when my surgeon came to talk to me, he listed what all they'd be doing in surgery, including that they would be doing an Oncotype DX test that would give them more information about my cancer. I had heard of this test in the breast cancer forums, but didn't really pay a whole lot of attention to it.

Then I had a brilliant idea:

"I should look up this test and see what kind of information it will give me!"

Why why why why why why why do I do this stuff to myself????? Especially when Dean is already in bed for the night so I can't tell him about it. (instead my poor sister gets the late-night messages.)

The Oncotype DX test looks at the cancer cells from the tumor, watches their activity, does some math then determines the likelihood the cancer will return. You can follow the link for all the details if you want, but if you're already bored with my cancer talk, and how I am/am not dealing with things, just know that I need a number below 18.

A number below 18 means I do NOT need chemo. Nope, not at all.

A number above 31 means the benefit of chemo outweigh the risks of the drugs. It will give me extra assurance that my invasive cancer will not return.

But a number between 18-31??? That means indecision. It means I will have to think, and weigh the risk vs benefit factors involved, and decide whether or not I should have chemo. Me. Stand on a teeter totter and decide which end to walk off of.

I hate this roller coaster. Hate. Hate is a strong word, but so is Cancer. I hate cancer. I hate the crazy. I want it to be July and all of this behind me. My birthday is the last week of June. It'll be an awesome birthday!

Stupid Cancer!

Take that, cancer!

Its done! Chemo is done!!

I had my last treatment on July 17th. Unfortunately the fatigue is cumulative with each round, so even though I did not have that evil Neulasta shot - so no bone pain - I am still dealing with some fatigue on day 14. (normally its gone by day 10) I had one day that I was feeling pretty good, and even posted something on Facebook about being back. Apparently it was caffeine talking. A couple days later my counts dropped further and I got sick. Today my neutrophils are at 400. I've been on a broad spectrum oran antibiotic for a week and will continue for a few more days. Without that I would be in the hospital on IV antibiotics.

Anyway, even though I'm still dealing with some side effects, chemo is done, and that is a huge thing! Clearly worth celebrating!

I have spent the last four months researching all of my option related to mastectomy and reconstruction while taking into consideration the risks associated with each decision.  I was, and still am, happy with my own boobs. I just don't want them to kill me. I have a 1/4 chance of getting cancer again if I leave them alone. I don't want cancer again.

Today I met with my plastic surgeon, Dr. L. I have used her in the past and knew she did breast reconstruction. She did her plastics training at Mayo clinic, and she is awesome! I have to say, my boobs are really the only part of me that I truly am happy with. I am NOT happy to be faced with the decision of whether or not to do a mastectomy.

First Dr. L.  looked at the size and shape of my breasts and the current scars from my lumpectomy and lymph node biopsies. Most women want to have a shape similar to their natural breasts. Based on where my scars are she thinks I am a good candidate for nipple sparing surgery. This is a big deal, because it means the end result is much closer to a natural breast. I really want to be comfortable looking at my own body, much less my husband. It is impossible to know until the doctors are in surgery and can take a good look at the nipple and surrounding tissue, but for now it looks like a good option.

Because there isn't cancerous tissue involved I can have reconstruction at the same time as mastectomy. That means as soon as the breast tissue is removed the doctor would place a tissue expander under the muscle of the chest wall. This would be left in for several months and slowly expanded through a port similar to the port in my chest. Once they're the right size (similar to my current natural size) I would have another out-patient surgery to exchange the expanders for implants.

Next we talked about the type of implants she recommends for me and why. I have been researching implants for months now. Who knew there were so many? I thought I had decided I would prefer a cohesive gel implant, but once I got to ask some questions and see them for myself I don't think so. I was able to feel all the different types of implants and see how they would look in position.  Dr. L. also explained that at the top of the chest there is often a cavity after mastectomy. She uses fat grafting to fill in that area.

Then we discussed timing of surgery. If I need to have radiation it is better to have the mastectomy done before radiation. After radiation nipple sparing is not an option. After radiation the skin will loose all its elasticity. The loss of elasticity means I would need to have a dorsal flap procedure done to have enough skin to create a breast. There is also another type of flap procedure, using abdominal tissue, but I am not a candidate for that.

Needless to say, I would prefer not to have the flap procedure done. More scaring. More risk of problems. Having radiation after mastectomy comes with its on set of problems an is certainly an issue to keep in mind, and I still need to find out if I can go without radiation if I'm having a mastectomy and have already had chemo.

I left feeling like I was, for once, doing something that was proactive instead of reactive. Chemo is reactive. Radiation is reactive. Mastectomy to prevent the recurrence of breast cancer in one breast, or a new diagnosis in the other is a proactive approach. Next week I will meet with my oncologist as well as my other surgeon (He and Dr. L would work together to do my mastectomy and reconstruction.)

There is  no way to 100% eliminate all risk of breast cancer recurrence or to eliminate the risk of developing cancer in the other breast, but mastectomy is as close to zero as a woman can get. 

Scars

I've been quiet lately. I have all kinds of things to say, I just don't know how to say them or where to start. I'm at a loss for words.

On September 12th I'll be having a bilateral mastectomy with immediate reconstruction. I wish there were a way to know what the end result will be. There is no way to predict how I will heal. Breast cancer stays with you. Forever.

Please watch this video. Breast cancer is not a pink ribbon. Breast cancer is about survival. It is also about the 39,620 men and women per year in the US who don't survive. ( http://www.breastcancer.org/symptoms/understand_bc/statistics ) If breast cancer stayed in the breast people wouldn't be dying from it.

Oncology check up and The Anxiety Monster

Today I had a check up with my Oncologist.

First, let me tell you, three years out and I still have trouble saying things like, "Today I'm seeing my oncologist" without my stomach turning in knots. The word oncologist doesn't belong in *my* vocabulary. It belongs to other people. THOSE people who have cancer. Oh wait...that was me, wasn't it? Three years and I'm still not used to saying it. A life-time of oncology appointments to go.

I once said to my doctor, "I need to stop thinking of myself as a cancer patient. I don't have cancer anymore. You took it out. Chemo killed what was left. You people rebuilt my body. Why can't I just move on?" I could tell from his face he has had this same conversation many times with other breast cancer survivors. "You had breast cancer. You will forever be a cancer patient. Some days you may not think of it at all. Other days you may feel fear, anxiety, and even panic. For some people this will decrease as time goes on, but for others it gets worse. All of it is normal."

Why all the worry? Every year out from diagnosis is another year that cancer could rear its ugly head again. We are given a long list of symptoms that, if noticed, warrant a call to our oncologist: back pain, unexplained fevers, unexplained fatigue, abdominal pain, bone pain, loss of appetite, severe headaches, seizures...the list goes on. You probably notice these can be normal, every-day aches and pains, yet for the cancer patient they can trigger worry. "My back hurts. Why does my back hurt? I haven't done anything for my back to hurt. Maybe there is cancer in my spine!  My belly has been tender for days. Why? Maybe  I have cancer mets in my liver!"  Take me for example. The last couple of weeks I've been running fevers for no apparent reason. One of the chemo drugs I was on causes Leukemia in approximately 10% of those who received it, and the survival rate of those with  chemo-induced leukemia is next to nothing. So, when I started running fevers for no reason, it has been difficult not to panic. In my head I say, "The chances of actually developing that leukemia is very low. 90% of patients on that drug do NOT develop it, so stop worrying." But, if you've been reading here for any length of time, you know that rare is the norm in our house.

So, as I said above, today was my three month check up. Well, really it was 6 months, but anxiety preventing me from going three months ago. I know, I know, that doesn't even make sense! But I just couldn't do it. Walking into that building causes me to break out in a cold sweat, my heart races, and I always...always...end up crying in the exam room for some odd reason. Today I was not going to do that. Today I would walk in, get my blood drawn (OMG! Maybe this time they will find tumor markers in my blood!) I would ask my questions and get the heck out of there! I don't drink wine, but today it sounded really good.

Well, wouldn't you know, they have a new thing in place at my oncology clinic. It is a quality of care survey that will remain in my chart, and they wanted me to put down how important various things are related to my care. Think healthcare directive here.

"On a scale of 1 - 5, how important is it for you to be pain free in your final days, if "pain free" means you take medications that make you unable to function or think clearly."

Seriously?????

I felt my chin begin to quiver. Doggone it! I was NOT going to cry at this appointment! I started to take deep cleansing breaths.

"On a scale of 1 - 5, how important is it for you to receive nutrition by any means necessary - such as a feeding tube - if you are no longer able to eat by mouth."

As I looked at the paper, the tears were threatening to spill from my eyes. Blinking would have made them fall for sure. The paper became blurry as my eyes filled. The nurse finished her tasks and left me alone with that form.  I quickly reached for the box of tissues, dabbed my eyes, and shoved the tissue into my purse. "I will NOT cry for the doctor this time. I will NOT!" How does one answer these questions when one is not dying? What if I say today I don't want a feeding tube but in that situation I change my mind but can't voice that decision? This is a stupid form!"

I finished the form and pushed it away.

Finally my Oncologist entered the room. He had to do a double take, looking at the  name on my chart then back at me, since he didn't recognize me. (that is another post.) I told him about the fevers. He looked at my blood results and said it looked fine from his perspective but encouraged me to see my primary doctor if the fevers continue. He did his exam and gave me the all clear to not return for 6 months. (WOOP WOOP!!!!!) And do you know what? I didn't cry for him today. Nope! I maintained my composure. I asked intelligent questions, and I made it out of there without hearing those words "you have cancer" again.

Yesterday I was fine, today I have cancer

Thursday

Audrey saved my life.

My new daughter, who we just brought home, saved my life.

I had to have a physical for my adoption. This is standard procedure and required. I've had the same physical four times now, as every adoptive parent does. My doctor reminded me I was due for my annual mammogram. I scheduled it for a few weeks later then, in the excitement of getting ready to travel I missed the appointment.  I would have forgotten again but this time Dean reminded me. His previous wife had breast cancer and he wasn't happy with me for skipping a mammogram last year.

Dean insisted on coming along for my 9:00 appointment then we would get a coffee afterward before dropping him off at work.

 First I had the mammogram done. Nothing like having your breast pulled down all the way from your chin!!! The imaging screen was behind me, out of view. When all the images were taken the tech put them up on the screen so she could make sure they were good images and nothing needed to be re-done. I turned around to see them myself.

Suddenly I couldn't breathe.

This didn't look like my mammogram from 2 years ago. No. No it was very different.

The radiology tech said she needed to have the radiologist review the films. When she returned she told me I'd be having an ultrasound. I was brought to a little waiting area while they got the ultrasound ready.

There were a couple other women waiting with me, all of us in our white, scratchy clinic robes. I wondered if they were just getting screened. I wondered what they knew about their breasts. I wondered if they were as scared as I was. 15 minutes ago I wasn't scared, now I was petrified.

"Leah?"

The tech put the wand to my breast. I asked her to turn the screen a bit for me so I could see. I was in school for a year for sonography. I didn't finish (we adopted Asher instead) but I was there just long enough to know what I was seeing on the screen. "That's not a cyst." I said.

In my head I was screaming, "Oh my GOD that is NOT a cyst. I know that is not a cyst."

Breathe Leah. Just breathe.

I went back to the little waiting area again, but this time I was alone. There were no other women waiting because they had their mammograms and got to go home.  It was only a minute before the nurse came back to get me. "Do you have anyone with you today? The radiologist would like to talk to you."

I wanted to vomit. They don't ask to talk to you, and if you have someone with you, when everything is all good. This was not all good. I could feel it, all the way in my bones. Every cell of my body screamed "RUN!"

I waited in a small conference room while the tech left to retrieve Dean from the lobby. I noticed a box of tissues on a nearby desk and quickly grabbed a handful, shoving them into the pocket of my scratchy robe.

Dean came in and sat down by me.  I couldn't talk. I wanted to vomit. I was afraid if I opened my mouth some kind of floodgates would open and the result would be really bad. And then the radiologist, in her white lab coat, stood before us, the tech at her side with her blonde pony tail and her pink and purple scrubs.  "I've reviewed your mammogram and ultrasound. You do have a mass there that is small, but it needs to be biopsied."

That is when my world started spinning.

I buried my face in Dean's chest and sobbed.

But see...here is where the doctor didn't follow the script that was in my head. It was at this point she was supposed to say, "This is just a precaution. Chances are this will come back fine."

But she didn't say that. She just stood before us, waiting patiently while I composed myself. She said nothing.

She told us we would have the results back by noon tomorrow (Friday).

The radiologist and tech left to prepare the procedure room while Dean and I sat and waited.

"I can't have cancer." was all I could whisper. It was all I could think.

Couldn't this biopsy wait until Monday? Let me digest this for the weekend? No...no...they do not waste any time here. This is a breast clinic and this is what they do. There would be no waiting.

Just a few minutes later they came back to get me. Dean disappeared to the lobby while I laid down on the exam table. The radiologist put the ultrasound wand to my breast and I stopped her. "You see these all the time. What do you expect these biopsies to show?"

She took a breath. Her words were gentle and soft, but very firm, very clear. "I am honest with all my patients. You're scared and you want to know so there is no reason for me to be vague. I expect this biopsy will show that you have cancer."

"I need a number. Can you give me a percent?"

"Well...I would say I'm 95% sure."

And then I cried. One of those silent cries where you want to say something, I needed to say something, but my throat was too tight to talk and...again...I couldn't breathe enough to talk.

"I'm ok. I'm ok. I'm ok....." I said. While I tried to breathe.

And then I told her why I was upset. About our family. Audrey. Everyone. I can't have cancer.

I cried some more.

Finally I said, "Ok...lets get this done."

The doctor was so patient with me. How many times has she had a freaked out woman on this same table asking the same questions?

She put the wand back to my breast and I told her what I understood of the image on the screen. "You would have made a good sonographer." she said.

She painted my breast with antiseptic. She explained she would be inserting a needle with novocaine (or some other numbing stuff, I don't even remember.) and it would hurt a little. It did hurt, but not as much as my tooth last month. Then she inserted a second needle for deeper numbing behind the lump.

"Next I'm going insert a special needle. When I'm in the right position I will activate it. It makes a loud clicking noise but it should not hurt. If it hurts please tell me." The whole procedure looked just like this.

Courtesy Mayo Clinic Health Library

I waited for it to hurt. My whole body tensed up with the waiting.

CLICK

I tried not to jump but I did anyway. It sounded like a staple gun. There was a small tugging sensation, but no pain.

"I need to do three more just like that. I will tell you each time so you don't jump."

I asked her to show me the sample that was taken. It was about an inch long, and a thick spaghetti noodle. "There's my cancer." I thought.

I started taking deep, cleansing breaths like when I was in labor. Long, deep breaths to take me somewhere else. To a beach, with sunshine. Anywhere but here.

"Ok. Here is the next one."

CLICK

I exhaled. I didn't know I was holding my breath.

"Alright. This will be the third. I'm activating now."

CLICK

"Ouch. That one hurt a little bit. Not bad. Like a pin prick."

"That was the deepest one. This last one you should not feel at all. Activating now."

CLICK

"There. That was the last one. Now I'm going to place a small metal clip, about the size of a grain of rice, into the lump. This marks it for future reference so if a new lump were to appear we know this is the original one."

The tech bandaged me up. Then the doctor asked if I have a picture of my kids. I showed the pictures I took back in August, then of Audrey on the day she was removed from the institution. Skinny, with her head shaven and in ratty clothes. Then I showed her a recent picture. "She's beautiful." we said together.

"This is a small lump. I can't say for sure until we have the biopsy results back, but typically this is treated with a lumpectomy and 6 weeks of radiation. Very rarely is chemotherapy needed for this type of lump. Six weeks of radiation won't stop your life. You'll be a bit tired, but it doesn't knock you down like chemo does. I expect that you'll be meeting with the oncologist and surgeon on Monday. But sweetie, you are going to be ok. This will likely show a very slow-growing cancer. Its gonna be ok! YOU are going to be ok."

I hung onto those words. No, I clung to them as if they were a life-ring tossed to me while I bobbed and floundered in the ocean.

They handed me a bright yellow sheet of paper with post-biopsy wound care instructions, then walked me back to the small waiting area. There were three other women waiting. I sat down in a chair in the corner. I started to cry. I couldn't stop. The tears just kept coming. Here were three women, waiting for their own  mammograms, and here I sat, golden ticket in my hand, sobbing. One woman wiped a tear from her eyes while the other two hid behind their magazines. I realized I was freaking them out and tried to compose myself. I picked up a magazine. What does it say? I couldn't really focus on the words or content. There is a puppy in the picture. Cancer. Do I have cancer? I don't like how the room on this page is decorated. What will the biopsy say? I couldn't concentrate on anything but the words screaming inside my head.

Yet another tech came to get me for another mammogram. This one is needed to make sure that little metal clip is in the right place. As she started to position my breast on the plate, my whole body started to tremble. Like I was freezing only I was dripping with sweat. "I need to sit down." I said, and she quickly moved a chair to me. Apparently I was a bit pale. I just needed a minute. Just a minute. Why was I shaking all over? I realized I was a bit shocky, probably from being really tense about feeling pain during the biopsy. Probably from just being told I have cancer.

I needed to talk to Dean. He didn't yet know what the doctor said in answer to my questions. He didn't know the doctor said this was going to show I have cancer.

We took the couple of mammo films that were needed and I was finally allowed to get dressed. I got into the changing room and pulled out my phone to text my sister. My hands were shaking so bad I dropped my phone twice. I sent her some garbled text about "its not good."

I walked to the lobby and spotted Dean. He came to meet me as my phone rang. It was my sister. "I can't talk now." I said, and hung up on her. I couldn't breathe. I was starting to hyperventilate. I wanted to run..run away...I felt trapped. "Get me out of here." I mumbled to Dean. Really, I needed him to lead me because I didn't know where to go because I couldn't think.

We left the lobby of the breast clinic, and the eyes of others waiting, and stepped into the bigger, main lobby of the clinic. I lost it. Never in my life have I cried so hard. Dean just held me as I sobbed. I felt my legs give out under me and Dean held me up. Through choking breaths I told him what the doctor said. That she expected this to be cancer. "I can't have cancer!" I cried. I cried so hard. Dean cried with me and held me, there in the lobby of the breast clinic. And I became aware of women coming off the elevators, moving into and out of the clinic, going about their business, seeing this woman freaking out and knowing in an hour that could be them. Or for some, that was them just months ago and they know. They know the shock. The disbelief. I didn't want to be part of them.

Finally, after several minutes, I was able to catch my breath. Everything about today was about breathing. It was so hard to breathe all day. I had to call my sister back. I looked at my phone. A little over an hour.  In one hour I had a mammogram, and ultrasound, a biopsy, and found out I probably had cancer. It was only 10:30 a.m.

Yesterday I was fine, today I have cancer.

Lumpectomy Post Op recovery

Part of my blogging about this cancer journey is for me, but also so that others coming behind me can be prepared. This is the information I looked for that I had a hard time finding.  I'm going to be very honest, and sometimes that may mean more details than you are comfortable with. Guess what? Breast cancer involves talking about things like nipples, breasts, milk ducts, and all things related to them. If you are uncomfortable with those words, please pray you never develop breast cancer.

I have two incisions. One is about 1/2 inch above the nipple and about 4 inches long. The other is near my armpit and about 3 inches long.

The first couple of days the most painful area was where the lymph node biopsies were done, which is near the armpit. The body chooses which are the "sentinel" (or first) lymph nodes to filter fluids from the breast, so when the doctors decide to find those nodes, it means sometimes those first nodes are not right near the surface. No, my first three sentinel nodes were a bit deeper, meaning muscles and stuff needed to be moved.

My chest has been wrapped in a large ace bandage to keep pressure on the area. Yesterday I was able to remove that bandage to shower for the first time. Ummm wow…. That bandage was covering the fact my boob looks like it was pummeled with a baseball bat. It only feels slightly better than that. It also only took me a second to remember what the surgeon told Dean when he was done working on me, "I had to take a bit more tissue than I expected." Umm yeah. Not all things are pointing in the same direction they used to be and…well…divots are for golf courses, not boobs! I'm told some of this will fill in with fluid as I heal. I hope so.

Today, day three after surgery, I'm still *really* tired. I've never been so tired so many days after a surgery. The anesthesia and complimentary drugs must have been a bit different this time, because I'm wiped out! Yes, I have cancer, but this was a very slow-growing cancer that wasn't yet affecting my general health. Maybe its just a combined problem of coming home with Audrey, finding out I have cancer and all that stress, getting the house ready for me to be out of commission for a few days, and then surgery itself?

I have a couple update posts coming about the kids. I'm tired of talking about cancer. Next week I'll have a visit with my surgeon and oncologist, but until then, lets talk about the FAMILY, shall we???