Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Friday, March 24, 2017

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.

Thursday, March 23, 2017

Take Two

One year ago in April, Angela had surgery to repair her liver. It was a procedure that had never been attempted before, but it worked! We couldn't pull her gtube yet though because the rule is she has to make it through flu season without any pneumonias, then we can pull it. Yippee! We made a final follow-up appointment with her liver surgeon for the end of April, with plans to pull her gtube May 1st 2017. Angela wanted to plan a party for it.

Then the last week of February, everything went south. Angela was wheezy and her nebulizer treatments and inhalers were't cutting it. She went to her nephew's birthday party, was gone just a few hours and came home a mess. I took her into the ER with what I suspected was aspiration pneumonia, and I was right.




CRAP!!!!

Her swallow had been doing so well! I became suspicious that something was up with her liver so started watching for some of the more subtle signs. I didn't need to watch very long. Within a few days Angela became very irritable. She complained of a headache. She became "flat" with no emotion and no ambition to do anything. She didn't even want to leave the house or go to school. Not wanting to go to school almost qualifies her for an ambulance ride. LOL Looking back at the very subtle signs she shows, we think her ammonia had been slowly climbing for about 6 weeks. I knew....

On March 3rd Dean had his right knee replaced. That same day Angela started declining. I had to leave him in surgery and run to her school. I ran her over to the University of Minnesota Discovery Clinic to get her bloodwork done.


 She was at 51. 20-50 is considered normal, so she wasn't super high, but she was acting like hers was higher. She was acting the way she used to act when she was in the 80's. Very odd. but enough to make a noticeable difference in her behavior and mood, which are our only indicators. That, and as you can see in the picture, she looked terrible. A few days later we checked her again and she was in the high 60's. Still not even close to extreme (she's been in the 280's before) I think maybe her body finally got used to functioning within normal levels so that little jump really made a difference for her.

We started her back on the ammonia scavenger drug Xifaxin (it is actually an antibiotic which, in very high doses, acts as a scavenger drug) until we could we could assess what was happening inside that liver of hers. She had an ultrasound done and I could see on the screen that jump graft was bigger than it had been in August.

Angela's team had a big meeting to go over everything and today she and I met with her surgeon to discuss their findings. The jump graft had, indeed, opened more than what it was in August. We are setting a surgery date to make another attempt to close it off. This will be done by the Interventional Radiologist.

In this procedure they will use a large needed to go though the liver into the portal vein, then guide a wire through to where the jump graft is and attempt to close it off. She will stay in the hospital overnight for observation, then come home and be back to herself!

However, if this attempt doesn't work, she will need an open procedure done. They will re-open her abdomen like they did last time.

Needless to say, we're hoping that doesn't big surgery become necessary. That was a very rough recovery for Angela.

Angela knows there is a surgery coming up, and in true Angela form she's excited for that. "What? I get an I.V? YAY!" She graduates from her transition program this spring so we're praying 1) the simple needle procedure will work and 2) we can get it scheduled without her missing any of the pre-graduation festivities at her school.

So, that's the Angela update for now!
SaveSave

Sunday, March 19, 2017

Sneak peek

Someone has a very special day coming up. 
Can you guess what it is?
 
 

Halo Shirts

Some of you were around six years ago when Axel had his cervical spinal fusion. That was quite a time in our lives! Waking up in a halo brace is pretty traumatic for a kid, not to mention the pain involved.





Axel had a bone graft taken from his hip, which was actually more painful that the actual spinal fusion.


Then, the body doesn't like the halo, and the muscles of the neck are constantly fighting the restriction so neck spasms were frequent for the first couple of weeks.

What I didn't know about ahead of time was how difficult it would be to dress him in a halo! They are big, they are bulky, and they are awkward. They also don't fit in a shirt! I searched the internet for some kind of pattern. Axel was shirtless for two weeks until I eventually came up with what I'm about to show you. I very likely found it in my search but I don't have any idea where. I'm just now posting it because 1) A friend's daughter is having the same procedure done and 2) I had a really hard time finding anything when I was looking.

First, I use iron-on velcro. It has adhesive on the back so it will stick where you want it while placing it, then iron it on. It holds up in the washer and will stay on a t-shirt for about as long as your child wears the halo. If you can sew, or know someone who can, you can use sew-on velcro if you prefer. For one child medium t-shirt you'll need approximately 29 inches.

SaveSave
  

You need a shirt a full size bigger than what they usually wear. Start with your shirt laid out flat.

Measure on both the front and back of the shirt, starting at the sleeve/shoulder seam, 5 inches.



Here's how I make the cuts. Please excuse kid and dog noise in the background. Its a busy house!


Where to place the velcro


Here is how you put the shirt on. Keep in mind when your child has the halo on, he/she won't be able to look down to see their feet or to put their hands in the sleeves. It is better to have them sit in a chair to put their feet in, then stand up to slide the shirt up. Until they're used to their new view you'll have to help them find the arm holes.


Axel wore his halo shirts everywhere.




Friday, February 03, 2017

Blast from the Past

When we moved into the new house, summer had arrived! All I wanted to do was be OUTSIDE, enjoying our beautiful yard with the kids. Painting and decorating would wait until fall weather moved in. We managed to get the two boy bedrooms painted, then the next day the Toilet Crime of 2016 happened. All plans of decorating came to a screeching halt as we demolished, then rebuilt the lower level of the house, and parts of the upper level. Then it was the holidays, and here we are! February. Its time to get some pictures up on these walls people!

For months I have had a particular project in mind but have had to put it off again and again. Today, finally, I am going through pictures so I can get this going. I found this video I don't remember taking. (It was while I was going through chemo, and I really don't remember much during that time) This video is bittersweet to me. Abel, when he was still trying to talk. He stopped long ago. Audrey, newly home, still not understanding English, instead giving us her fake barbie doll smile. (You'll see it. It was very fake! It was a "survival smile", that she used even in Serbia when she didn't understand what was going on. Look how little they are! Abel is a young man now. His voice has changed, and he's taller than Angela. Audrey, looking pretty lost, has recently gone through a huge developmental leap, is trying hard to say words and just seeming more aware of her surroundings.



Thursday, February 02, 2017

Three months and I'm back!

I don't think I've ever taken such a long break from the blog. Is there anyone still checking in????

So much has happened in the last 3 months, I don't even know where to begin. I will say, my hiatus was precipitated by "The Toilet Crime of 2016".

Yes, there was a flood. A flood of very dirty water from a toilet on the upper level of our new house. The last week of August. The week before school started.

I woke up that morning hearing Abel laughing his "oh I did something naughty!" laugh. I was so sleepy and groggy. I opened one eye to find the sun was barely up, and Dean had already gotten up so figured he would deal with whatever Abel was up to. Then I heard Abel laugh again, and an odd thump sound, like somebody had fallen.

I jumped out of bed to investigate, as I approached our bedroom doorway my foot splashed in water.  step splash, step splash splash splash....what the heck? In the hallway I was standing in over an inch of water. Still not awake I hollered.

"DEAN!!!!!! DEAN!!!!!!!"

Where was he? Why was Abel upstairs? What is going ON???"  There were clothes floating out of the toilet, making it clear this was an intentional disaster of the type Abel enjoys. Yes, he likes to plug toilets then keep flushing over and over again as the water runs out the toilet. This one was especially pretty since there was also poop now floating on the bathroom floor.

I threw open the bathroom linen closet to grab towels, only there were none there. There never are. UGH! I splashed my way out of the bathroom to find towels, and realize Abel is dripping this wet - that must have been the thud I heard. He must have fallen in the water - and is laughing as this dirty toilet water is tracked all over the house. GAH!!!!!! I ran to the lower level for towels. When I turned the corner into the lower level hallway there was water coming out of the light fixture. "OH MY GOD!!!! DEAN!!!!! Where ARE YOU????"

I turned into bathroom. Axel was sitting on the toilet looking stunned. Probably because directly over his head was the bathroom vent, with water pouring out of it and onto him!!! "AXEL! Get UP!!!!" I pulled him off the toilet. "DEAN THERE IS WATER COMING OUT OF THE CEILING!!!!" Just then I heard Dean come in the door. "Whats wrong?" he hollered. He had run to the store for milk before the kids got up for breakfast, not realizing Abel was already awake. I went back to the hallway and looked in all the bedrooms. Axel/Abel's room was fine. Audrey's room was fine. Asher/Amos' room was a different story. There was water pouring out of the ceiling and was still running. How could there be so much water???? (we never did figure that out. He probably flushed the toilet 10 times or something)

That dirty water caused major damaged through two levels of the house, which resulted in an SOS call to the insurance company. Within a couple of hours there was a demolition crew at the house, destroying it!!! They had to GUT the upstairs bathroom (floor, sheetrock and vanity)  upper hallway (wood floors) lower level hallway (ceiling, carpet, sheetrock)  bathroom (floor, vanity, ceiling, sheetrock) and one bedroom (that I had just finished decorating the day before, now destroyed carpet, walls and ceiling)  We spent the first week of school living in a hotel room with 6 kids and two dogs.

Once the demolition was complete we had to wait for the other part of the insurance cogs to turn. We had two months of the 8 of us using our small 1/2 bath in the master bedroom. But it could always be worse, right? There were several times over the course of the rebuild that we had to be out of the house for several days at a time. Since the carpet in the lower level was destroyed in the hallway and one bedroom, we ended up having to replace all the carpet in the lower level and main level (because it's all tied together). Money we weren't really intending to spend at this particular point in time!  Because the wood floor in the upper hallway had to be replaced, and you can't just replace one area and think its all going together with the rest of the wood floor, we had to refinish the entire wood floor in the kitchen and dining area too. (thankfully that was covered by insurance!)

Anyway, the last of the project was completed the first week of December. Then we RACED to put the house back together because I had major GI surgery on December 7th. ;-) (All went well, I'm fully recovered and back to normal)

And here we are. February already! Our first Christmas in the house was beautiful. Even with all that was going I feel so much more at peace than I have in years. I'll try to post some pictures from the last few months.