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.

Down Syndrome Awareness Month: Update on the adult child

It is a sad fact that I can't follow through with anything. It is amazing to me (and to Dean!) that we

have completed any adoptions because they each require a ton of paperwork and a process that must be followed in a timely manner. I guess, for a time, God had me focused more than I'm able to right now. I still intend to do the breast cancer photos, and have actually spoken with a photographer about doing a specific photo shoot. Now to carve out some time!

In the meantime, it is also Down syndrome awareness month. We have had SO much going on here lately, I thought I'd give you a little update on Angela and all that she's been up to.

A year ago Angela entered a career exploration program with a local agency called Lifeworks. They had a pilot program going called "Small Group" at different locations throughout the metro area. Angela was in a group that was based out of the St. Paul skyway system. The very first day was difficult, though probably more for me and her staff than for her. It started with Metro Mobility dropping her off way too early, so there was no staff to meet her. But when she entered at a building she saw a huge escalator that she remembered from the one visit we made months before. She went up the escalator and found the coffee shop where we had met during that visit. She remembered I told her the job coach's number was in her phone, so Angela called her. All was good, and the job coach met her right away. The next day Angela got very lost, as in 6 blocks away (but still within the skyway system.) She found herself in the Federal Courthouse, found a security guard and told him she was lost. She was quickly reunited with her group. Of course, it was the first time they had lost anyone. Leave it to my kid. UGH!  Within a couple months of starting the program Angela was navigating her way around the whole skyway system independently, and was now acting as the leader when new coworkers started the program. This is something that is difficult for most adults! She was even able to exit the skyway, then take a city bus to a specific location, and sometimes took a couple co-workers with her. She did this successfully, and without knowing she was being shadowed by an employee who was not known to her. ;-)

In July it was time for Angela to find a job but we needed to get her through a major surgery first so opted to wait until the end of September to start interviewing.  She went on a couple of interviews but I didn't really think they were jobs that would actually pan out for her. Then her job coach took her to an interview at McDonalds. I was a little disappointed because I didn't want Angela working in the fast food industry. She is a bit food obsessed and I could just imagine her packing on the pounds! The interview went very well, and the store manager really liked Angela and her enthusiasm! She offered Angela 25 hours a week to start. I was very surprised. A lot of adults in our Down syndrome community are only given a couple of hours every day, some only a couple of hours per week. For many that is all they're able to work and stay on task. I wondered if this was really a good match for Angela, and maybe the bar was set a bit too high? I convinced everyone that 20 hrs a week to start would be better. She is paid minimum wage of $10.25/hr, and after 6 weeks will get a raise, then again at 6 months. This is pretty good for her first job, and on par with what others are getting paid for their first job.

Angela started her job with a job coach going along for the entire shift. The job coach showed Angela each task on her list. After the first day it was evident Angela could handle additional responsibilities, so they added to her list. They only needed to show her a new task once, sometimes twice, and Angela was able to complete them without assistance or reminders. Everyone has been saying how fantastic she's doing and all I can think is, "This is the same person who won't put her laundry away without lots of nagging from me!" At the end of every shift Angela is given $7 in McDonalds credit to buy a meal. The first day she came home with a lot of food. She and I came to an agreement that on Monday I will text her what she can order for the week, so now she's getting lower calorie items. She seems happy with this agreement, and it fits well with her desire to know everything ahead of time, at all times. HA!

Friday last week was the first day she was on her own, without a job coach. Dean and I couldn't resist, so we had lunch at McDonalds.  Angela was working in back when we arrived, but while we were eating she came out front.  That stinker completely ignored! She acted like she didn't see us! When she went in back we heard her announce, "My mom and dad are here!" When she came back out front, she continued to ignore us. LOL The good thing is she stayed on task, doing her job. She collects the trays, washes them, and gets them ready to be used again by putting the paper placemat thingy on, then stacking them behind the counter. She cleans all the tables and the condiment area, makes sure the beverage area is stocked with cups, lids and straws, and that all flat surfaces are cleaned off, straightens all the chairs and tables, empties the trash bins and places new bags, carrying the full bags out to the dumpster. Whenever someone comes in the door Angela greets them like royalty, with a sweep of her arm and, "Welcome to McDonalds Sir/Madam!" She says hello to the little kids, stooping to their level,  and elderly customers as well. Yesterday when I picked her up I asked the manager how things are going. She replied, "Oh my gosh! She makes our customers so happy! She even got a tip today! Everyone adores her." (Who gets a tip at McDonalds???)  The manager told Angela, "When you're done there you can go ahead and clock out." but Angela kept working another 30 minutes because she was enjoying her job.

I cannot begin to tell you how proud I am of Angela. The past year she has matured SO much, it is hard to believe she is the same person. Now she can work on that apartment she's been wanting. She's been on a waiting list for a roommate, and we hope it happens soon so she can fledge from the nest, just like all her older siblings did!

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.

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. 

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.

It's my Cancerversary!

Cancerversaries are an odd thing. As survivors we celebrate that we are still walking on this earth to tell our story, living our lives. The day also brings with it a flood of memories of "that day". The day when our lives were forever changed. The day we learned we're not going to be around forever. The day we learned we, as humans, are just walking around with targets on our backs! People who have never had cancer will say "Oh, get over it. Its behind you. Move on with your life." And we do that, mostly. For me, every check up with my oncologist will bring with it trepidation.

Here is how my story began, three years ago.

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

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.

Time hop after Cancer

Every day the Timehop app reminds me of some event over the last few years. For some things, I don't need a reminder. Like a birthday or anniversary their dates are stuck in my head.

July 17, 2014

That date marked my last round of chemo. It was the hardest of all my rounds. Not just because chemo side effects are cumulative, but because I had opted to skip the Neulasta shot that caused so much of the bone pain. Normally I bounced back from each round in about 10 days, but that last one took six weeks.

This week I will go for my two year check up. Once you have breast cancer, you are forever a cancer patient. Forever. Its possible you will will never develop breast cancer again, or you could within just a few months. Because my risk of recurrence in the first five years is relatively high, my check ups always come with a lot of anxiety. Because I've had a mastectomy, there will be no lumps to look for. Because I have implants there will be no mammogram. There is only blood work to look for tumor markers, and PET scans to find active cancer cells. If cancer is found, I will automatically be stage 4.

But for today, I continue believing I am fine, I am healthy, and I am here. 

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.

Thinking about it

When I was diagnosed with breast cancer, and contemplating having a single or double mastectomy, I spent hours upon hours scouring the internet for before, during and after pictures. What was I in for? What could I expect for an outcome? What was the rate of failure? What are the complications?

Those pictures were hard to come by unless I wanted to join private forums or groups. I watched videos of women who proudly displayed their scars. Some as a form of awareness, some as a badge of honor, most as a combination of the two.

I need you to know that underneath these clothes I don't look "normal". If you're on my Facebook page I'm sure you remember the fun discussion about ordering nipples online. (I chose not to have reconstructed nipples.) I chose many things along the way, and I don't regret one single choice. Could I still develop breast cancer? Yes, I could. At the moment I'm not taking my aromatase inhibitors because they make me so sick. I hate them. I can't live life on them. But, not taking them puts my risk of recurrence quite high. I just have a really difficult time dealing with the fact I'll be miserable for the next eight years on those drugs. Anyway, a friend of mine saw my pictures privately and was shocked at the process. She had no idea. Even though these surgeries were brutal (some of my wounds made Dean weak in the knees) I walked around as if I was all fine. I had to. I have a family to care for.

So I'm thinking about it. I'm thinking about posting a series of pictures showing the process, starting with my first surgery. I'm still debating. Its  very personal decision to put myself out there like that. Anyway, its just something I'm thinking about doing, just don't be stunned to show up here one day and that's what you find.

2016...BRING IT!

For the last 29 years I have done what mothers around the world do; I have taken care of everyone else. The last five years have been even more intense, working on bringing kids home and parenting through some really rough stuff. Then 21 months ago came cancer, and I found myself in for the fight of my life. "Taking care of me" meant keeping me alive.

Now it is time for me to turn the tables. Oh, I have made half-hearted attempts in the past, but this is

it. This is the time for me to take care of me, from the inside out. Getting rid of all the left-over crap that hangs on my body, and replacing it with a new, healthier version of me. One who has the energy and ambition to keep up with the life we have created here. The commitment has been made. My trainer(s) are waiting, the weights are waiting, the cycles are waiting, the sweat is waiting, the pain is waiting.

So here is my "before", for all the world to see. 

Bring it on 2016.

Bring. It. ON!!!!!  

And high praise for my plastic surgeon who gave me new boobs!! If you're in the twin cities area and need a referral for a surgeon specializing in breast reconstruction, hit me up! 

The end of a season

Do you know what today is? Well let me tell you! Its the end of the season of my life called "cancer".  Yes, I finished treatment ages ago (16 months ago, in fact), but I've still been dealing with this stupid reconstruction process. 14 months ago I had a bilateral mastectomy, and today I'm in surgery, having my horribly uncomfortable tissue expanders removed and replaced with implants. Also, because of the way breast reconstruction works, it also involves liposuction at the sides of the ribcage to even everything out.

Looking back at the last 20 or so months since I was diagnosed, there are some things I wish I had known. Here is a letter to that self.

Dear Me,

Today you were told the worst news you've ever heard in your life. You have breast cancer. You felt your knees give out beneath you as you best friend and life partner held you up. You sobbed the longest, loudest sobs. As you cried, noises escaped from your mouth you didn't know were even possible. Primal fear. What you are feeling now is primal fear.

I'm not going to tell you, "Don't worry, you'll be fine." because its impossible to not worry. You're going to spend the next few days (or even weeks or months!) numb. You will think you're losing your mind because you keep forgetting odd little things and can't concentrate on anything. Its ok. You're normal. Your brain is on overload and it can only process so much right now. Remember that primal fear? This is part of it. You are in survival mode. Don't worry about the laundry right now. If it doesn't get done the world won't end, but if it helps you by all means do it.

Start a list of questions for your doctor. Even if they seem silly, write them down.

Do NOT, I repeat DO NOT set any kind of timeline for when you'll be done with treatments and/or surgeries. There is no way to predict how each woman will respond to various steps in the process and its easy to get disappointed when your treatment or healing doesn't go according plan. Mine was supposed to be a "three month speed bump" in my life, and here I am 20 months later, just finishing up. Don't count on "you won't need chemo" or any other treatment predictors until EVERY test has been completed.

Everyone is going to send you emails and private messages with the most outrageous "cures" for your cancer. Use your "delete" button generously. Everyone means well and only want whats best for you, but they forget your doctors spent years in medical school, and more years treating other women just like you. He or she knows the latest TRUE research. Listen to your doctors, but if you don't feel comfortable get a second or 3rd opinion.

Nipples aren't necessary for life, and if you don't have them there is no "show through" so no need to wear a bra. Oh, and you can buy nipples online. For real. You can order any color you want.

When something doesn't sit right with you, trust your gut and ask questions. Remember that you are your own best advocate. If you don't feel comfortable speaking up, have your partner help you.

Speaking of your partner, he's hurting too, in totally different ways. He's scared to death about losing you. Suddenly the weight of the entire household is on his shoulders. Remember to encourage him to take a break when he needs it. Spending a few hours with his friends or brothers can make a world of difference for him.

Sleep. Sleep and don't feel guilty for sleeping. Your body needs to regenerate healthy cells and the rest of you needs to rest while that happens.

Everything tastes bad when you're on chemo. Moutain Dew will taste like salt water, but banana cream pie blizzards taste heavenly. Oh, and Jimmy Johns delivers to the chemo clinic.

In the coming weeks you're going to be very run down. Try to organize your house in such a way that if someone comes in to help, its easy for them to see what needs to be done. Let go of your need to control all things, even if that means turning on the white noise machine in the bedroom so you can't hear whats happening in the rest of the house. Resist the urge to take over. RESIST!

Don't try to potty train a child during chemo. Really, its a terrible idea.

You may look at your body and hate every scar, or you may embrace them as badges of honor. Whatever floats your boat, but do not EVER be ashamed of those scars.

Let the kids do washable marker art on your head. It feels awesome and they have a blast.

Steroids really do make you crabby. When you notice you're snapping at people, its better to just excuse yourself for a nap.

Chemo brain is a real thing. Unfortunately sometimes it sticks with you long after the chemo is complete.

You have a long road ahead of you. Right now you're trying to see into the future and its just plain impossible. Try your best to live for today. Notice the smiles on the kids' faces. Notice when they seem worried or anxious. Take the time to give them an extra hug. Let them sit on the bed with you and watch movies while you nap. Let them take care of you in their own ways. Its really important to them.

You don't need to make excuses to anyone. When you feel tired, its ok to say, "You know, I know you wanted to have coffee today, but I'm just too tired to even listen to talking, much less get out of bed."

Its ok to complain, and its ok to cry. But, if you're feeling overwhelmed by it all, its also ok to talk to your doctor about a little pharmaceutical help.

Just say "No" to Effexor. Its terrible to get off of!

If you're sitting in the warm summer sunshine shivering, take your temperature. You're probably running a fever. Likewise, if you feel you can't make it up a flight of stairs without sitting to rest, its time for some IV fluids!

Take care of yourself however you feel is right for YOU.

....................................................
 A lot of you reading are cancer survivors yourself. What would you tell yourself on that day you were diagnosed?

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!

Happy Mother's Day

Happy Mother's Day to all the moms reading!

There are probably some new readers here who have come from the Pioneer Press article about our family. Let me give you a little tour:

Some are curious about life juggling kids and cancer. You can read all posts related to breast Cancer by clicking on the Breast cancer label in the left sidebar.

If you're hete to learn about our adoptions, or the Serbian adoption process, you will want to move over to our adoption blog.

Thanks again for paying us a visit here. I hope you stay awhile! 

Remember when I said...

Remember when I asked "What should I do?"

Between the comments here and on Facebook, there were some great suggestions, even if some did include water (Hello, I don't DO water!). So here's where what I decided:

I want to learn these things this year:

• Some kind of dancing - Ballroom or Hip Hop are on my radar
• acrylic painting
• how to play the guitar, or at least some basic chords. I want to be one of those moms who can play the guitar and sing with her kids. Like in the movies.

I want to do:

• I was going to do skydiving. But..ugh…I dunno. Angela REALLY wants to skydive and she is over 18 now so..maybe? I would love to try the indoor skydiving thing. I'm trying to find a local place.
• I want to climb something. Not like a mountain, because, well we live in MN and there is a lot of flat! 
• I want to take a really long walk. Like the 3 day for breast cancer, only I don't want to support that particular organization. I think I just want to do it because I can. Maybe as a fundraiser then donate the money back to an organization, like the Down Syndrome Association of MN, or a Breast Cancer related organization who I know spends the money well. First I have to start the training regimen to be able to do this. I might start tomorrow.

I want to meet one person this year:

Actress Kathy Bates. We share a birthday and a journey through Breast cancer. She is an actress and I used to do a lot of community theater. If I could be a real actress I would be a lot like Kathy.   I don't know how to make meeting Kathy happen but now that I've put it out there, maybe God will help me find a way.

Now, I am off to take a walk then find someone to teach this broad how to play guitar. Oh…I should buy a guitar. Hey! Maybe Kathy would want to do the 3 day walk with me? Kathy, if you're reading I promise not to talk too much. And besides, if you're reading here you've already decided I'm a crazy stalker lady.

The year I disappeared

One year ago four words changed the course of my life as I knew it.

"You have breast cancer." 

The battle was on. Every ounce of my being became about the fight for my life. The future ahead of me and the information I received from my doctors on a daily basis felt like a battle ship parked on my chest. Crushing me. That first week was all about breathing. Several times each day reminding myself, "Breath in, breath out. Do it again." 

I went through the motions of each day numb. "Please God. Please NO!" I lived a charade of acceptance and positive outlook. That's what everyone else needed to hear, and its what I had to tell myself. I didn't FEEL positive. I lied. While I told myself and my loved ones, "I'll get through this, I'll be fine. I'm good." it wasn't what I was thinking inside. Inside I felt death stalking me. At night I was plagued with dreams of rotting flesh, breasts falling off in the freezer isle of the grocery store, and hospital morgues filled with not bodies, but boobs. Hundreds and hundreds of boobs. 

And then I started chemo.

Chemo is the epitome of the battle between good and evil; pumping poison into our bodies to keep us alive.

Chemo caused the loss of myself, and I watched as I disappeared into a chemical haze. Swimming through the murky cloud was all I could do, like sea life covered in oil after a tanker spill. Only by the grace of God, because he loves me so, was I able to keep moving each day. Swimming in thick, greasy, muck, my limbs exhausted with the effort.

I was still a mother. 

I bathed the children. 

I read to the children. 

I fed the children. 

I did the laundry.

I scrubbed toilets. 

I did all the things the mothers do. In the haze. In the oil and muck. In the filth that is chemo. 

I did all the things the mothers do, only it wasn't me because I was gone.  I was lost inside myself and I didn't have anything left for anyone else, but I did it anyway. 

The days I was in agonizing pain, I eased myself into a steaming hot tub of water, tears streaming down my face as each wave of agonizing pain washed over me, threatening to crush my knees and hips into bits of nothing. I cried out to God, "Please God. Please…please…please make it stop. MAKE IT STOP!" And He would answer my prayer every time as I drifted off to sleep in the scalding hot water. As it cooled to room temperature I would wake, groggy and ready for my bed. The pain nearly completely gone. And I would sleep. I would rest knowing He was still here, even if I wasn't. 

It took months to come out of that fog. As I did, I realized my body held so many remnants of the attack. My finger and toenails had turned gray with black streaks, four deep ridges running across each nail, evenly spaced, one for each round of chemo. My body was void of any hair. Over the next few months I watched my nails slowly change, the discoloration growing out to the ends. Each time I clipped my nails I was clipping away the evidence of my toxic bath. The color of my skin slowly improved. My eyebrows, lashes, armpit and pubic hair returned.

Then came the darkness.

Triggered by a combination of chemo and the stress of several surgeries I was thrown into menopause. Thrown as in, "The woman was loaded into a cannon, the fuse was lit and she was shot directly into a brick wall which has been reinforced with steel rods. SPLAT!" 

Women who go through menopause naturally experience the changes over a period of years. Mine happened in a week. I was irritable, and I was depressed. I was all about doom and gloom. I said "fuck" a lot. I had finally made it through chemo's oil slick into clean waters, but I was still drowning! I was swimming as hard as I could, kicking and paddling but still sitting on the fucking bottom of the fucking sea!!!! I've never been a good swimmer really, so its no surprise I couldn't save myself. But God! He reached his hand deep down into the waters and ever so gently brought me to the surface. Not too fast that the pressure change would kill me. Just fast enough that I could look around a bit. Get my bearings. Regain my balance.

When I finally broke the surface I gasped at the freshness of the air. I marveled at the sunshine, even in the midst of our Minnesota winter. So much time had passed! I inhaled deeply, filling my lungs, expanding them, for they had been crushed by the depths for so very long.

Only recently have I found my way to the shoreline and basked in the warm breeze, letting the sun warm my body. Alive. Rested. Energized. I was finally ready to leave the shoreline to explore life once again.

I began to find the joy in my days. The joy in the mundane. Each morning to be greeted by the amazing people in my house. Those sleepy hugs from Asher that he saves for only me. Angela a young woman ready to graduate high school in a couple of months. Axel, tall an strong, responsible and helpful. Abel with his nervous chuckle, wanting to please me. Audrey, joyful, determined to be heard by all. 

And my love. 

How I love this man God blessed me with. My true partner, walking through each day with me, both of us perfectly in step with one another. Finishing each other's sentences. A team matched by the God who knew what was ahead. I was so lost for so long, but when I returned he was right here, waiting to pick up where we left off, only better. We are BETTER than ever, so in love that sometimes I wonder how it could be that my heart ACHES with it?

A year. 

The journey of a lifetime. 

I am back! 

Its been awhile

Hi everyone.

I'm still here. We're still here. Life is good, just very, very busy. I like it that way! I have some projects underway I want to blog about but I'm having a lot of trouble putting my fingers to the keyboard these days.

Tomorrow I will have my 6th surgery in 10 months.

Oophorectomy. Ovary removal. Take those suckers out to decrease the level of estrogen in my body. Decrease the estrogen that fuels my cancer. Its just an outpatient procedure, but thats how they do a lot of these surgeries now. Three of my major surgeries have been outpatient and I was home in my recliner - heavily drugged - by 5:00 pm.

It is kind of weird that Dean and I have a routine worked out for when I have surgeries: who does what to get the house ready for me to be out of commission, what to do with the kids on surgery day, knowing how long it usually takes for me to wake up from anesthesia, get through recovery, etc. Who in the world makes surgery part of their normal? Today I was getting kids of buses, telling drivers who will be here with the kids tomorrow. One of the drivers said, "Well, you always recover so well and jump right back into life."

"Always" because this is normal for us. That's just weird.

And yet there is always that tiny fear. In the last week people have made comments like, "This will be a piece of cake compared to your other surgeries." and "You'll be back to yourself in no-time." Those statements feel like a foreshadowing to me. Kind of ominous. Like this one surgery that is supposed to be so simple may not go so well. But I will do what I always do, making sure Dean knows where all important documents are, just in case.

You'll be happy to know my left foob (fake boob) is looking fantastic as my plastic surgeon continues to expand it. It almost looks like a nipple-less breast now. Oh, oops! I almost forgot that the expander slipped under my arm so it looks like a nipple-less breast under my arm. Aren't you glad I don't post pictures?

My right side, the one with the horrible infection over Christmas, has healed nicely. In the world of breast cancer reconstruction that means I don't have open wounds anymore. What I do have though, is a huge dent and some creases that don't belong on a woman's chest.  All my tops look a bit odd with only one boob. Occasionally I wear a prosthetic but I get so HOT with it. Most of the time I just wear bulky sweatshirts. This is the first time in my journey that I have felt uncomfortable with my appearance. As you can imagine I'm looking forward to April when I can start rebuilding that side again, and next fall (next FALL!) when I can have my final surgery.

So tell me, what have you been up to the last month? What is consuming the majority of your time? I'm making some changes in our life that I can't wait to tell you about. Where do you feel you need to make changes in your life?

Hello 2015, pt 1

2015, you're going to be a better year, I just know it!

However, if 2015 is going to be a better year, I need to take some steps to make it happen. 

In my Christmas Eve post I mentioned I had been in the hospital. Those who follow me on the FB know some, not all of the details. Here is a quick recap (which will be followed by changes for 2015):

Remember: September 12 - double mastectomy, October 27th - surgery to replace both tissue expanders and clean up infection and scar tissue.

Week of November 17 I went in for a tissue expander fill, but first asked my doctor to take a look at my incision from my last surgery. She decided to hold off on the fill that week and wanted to see what the incision was going to do. 

November 26th, day before Thanksgiving: I have an area of really thin skin (which really means no sub-cutaneous fat) that wasn't happy being stretched and was splitting open. The surgeon did a scar revision in the office. Come back in two weeks.

Thanksgiving Day I get hit with Influenza.

December 10th: incision still isn't looking good. Plastic surgeon removes a lot of fluid from the tissue expander to allow enough skin for another scar revision in the office. Come back in two weeks.

December 17th: Incision is looking better, but no fills allowed. Lets leave it alone until after the holidays and just give the skin time to heal.

Friday, December 19th: My sister and I spent a fun Friday night playing with my polymer clay buses. Aren't they cute?

Saturday December 20th: Dean and I do some Christmas shopping, arrive home about 5:00. At 6:30 my pec muscle on my problem side is suddenly very sore and stiff, as if I've been lifting weights. I have very little sensation in my chest so I'm concerned that I can feel this. About an hour later I spike a 103* temperature. I think I have the flu again and call the hospital to see if I can come in and get Tamiflu since I'm in the "high risk" group. I decide to wait until morning because I have a suspicion this isn't the flu. I go to bed hoping the fever breaks, but I am miserable.

Around 2:00 a.m. I woke up with an odd sensation in my chest. I went to the bathroom mirror and lifted my shirt. I was a bit horrified to find the "odd sensation" in my chest was a significant amount of swelling. Crappity crap crap!!! I decided a few hours isn't going to make much difference so I went back to bed.

8:00 am: Called my surgeons office. The Dr. on call told me to head to the ER where an ultrasound is done and there is a huge amount of fluid that they drained and sent out for cultures. (so very weird watching on the screen as this extremely long needle is inserted into my boob and the fluid is all sucked out! While they were waiting to admit me they went ahead and started me on two different oral antibiotics (vancomycin and Gentymicin) Only I reacted to the Vanco so they added benadryl which knocked me out for several hours.

I stayed on IV antibiotics for two days while also getting more benadryl with each dose so I mostly slept. I still had a 101 - 103* fever so sleeping was fine with me! My chest continued to swell. I was not even an A cup before the infection but now I was swollen so huge it took both my hands to cover the area. The swelling went all the way around to my back. Thankfully it didn't really bother me much due to lack of sensation. Still I was on pain meds because my BACK was killing me from the hospital bed. LOL I made Dean come into the bathroom in my hospital room to take some pictures of my chest. Nothing like some really bad porn shots for the family scrapbook! LOL

I was so upset by this whole turn of events. I knew I would be having surgery and I would be flat on that side. No breast at all, not even a fake one. I wanted to be done. Just leave me alone and I will be flat. I don't care! I didn't care about bald and I don't care about flat. But I DO care about having one boob (called a "uni-boob" in the breast cancer world) and I did NOT want to do that. DID NOT! I was sick, I was miserable, I was crabby, and I had a massive caffeine withdrawal headache that I could barely see past. All I could do was cry or snap at someone. I was one hot mess!

 Tues December 23rd I had surgery remove the tissue expander and clean up the infection. Afterword my surgeon told me it was a mess in there. I am now flat on that side and maybe almost a B cup on the other side. I am not wearing a prosthetic because, like wigs, they pretty much drive me crazy. Not only is it very obvious even in clothes, but the fabric of all but the thickest materials falls right into the very deep DENT I have in my chest. 

Christmas Eve: Discharged from the hospital, yet another drain in tow.

Coming up: Meeting with my new oncologist and decisions that must be made

Good Riddance 2014

Dear 2014,

You were not super kind to us. You are certainly not my favorite year. Thankfully many of our really good memories of you are related to Audrey, getting her home and watching her grow and thrive in our family, as well as memories with the other kids.  But you also brought with you Cancer, many surgeries, chemotherapy, mastectomy and the beginning stages of breast reconstruction and much heartache to go along with it all.

You, 2014, are done. Good Riddance! 

The Bucket List

Our mortality has a way of slapping us in the face sometimes. Cancer will do that to people. It causes people to realize they have a lot left to do. I have a few things on my list I have always wanted to do but never had the time, money, or the guts to try. Here's my list, in no particular order:

1: Ballroom dancing - ok really I would like to try any kind of dancing. Well not ballet, as I would be an insult to the art. But Ballroom, hip hop, Jazz, Tap…all of those. I want to try something.

2. Skydiving. Actually Angela and I want to do it together but I think I'm too afraid to do it.

3. Ziplining. I want to go to some tropical place and ride a zip line through the jungle. As long as there are no snakes I'll be fine.

4. Visit Australia. I need to make this happen soon so I can see my friend K. We have known one another for about 10 years through the Down syndrome community. A few years ago K. was diagnosed with stage 4 breast cancer. They day she told me I wanted to jump on a plane right then. Somehow I need to make this happen.

5. Honeymoon. Dean and I still need to go on our honeymoon. Maybe we'll do that in Australia?

6. Be on a talk show. Seriously. Ok, not likely to happen but when it does hopefully its not Jerry Springer or Maury Povich.

7. Learn to sculpt with clay. I want to do it for real and make  nice stuff. I just need to learn HOW.

8. Tae Kwon Do. Yep, I want to do that too. If I do ballroom dancing and TWD at the same time, I should get into pretty good shape, right?

9.

10.

Ok, thats all I can think of at the moment. I know the others will come to me as they frequently do during the day! How about you? Whats on your bucket list?

Not just a boob job

So many people are of the mistaken impression that having breast reconstruction is a good way to have a breast augmentation (aka a "boob job") covered by health insurance. What people don't realize is that reconstructed breasts are not the same as augmented breasts, and that having their breasts reconstructed is a nightmare for most women.

We didn't WANT this! We don't want the scars. We don't want the pain. We don't want what often ends up being multiple surgeries, and the scars they leave behind, in the hopes we will someday look normal. We have cancer to thank for that.

If you are interested in purchasing the tshirt pictured above, please follow this link!