Blogging about life and raising our five kids with Down syndrome.

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

Tuesday, April 15, 2014

Do it

If you are a woman, please please please watch this video. (it is not for kids)



Now do it. Every day. Touch yourself. Know your breasts so when there is a change you will recognize it. Don't skip your mammograms. Do you know if I had skipped this mammogram, my journey would have been very different? It could have killed me.

Since my diagnosis several friends have told me they've had mammos done, one that came back with a mass and is waiting her biopsy results.  Two other friends had genetic testing done and one found she carries the BRCA1 gene. Some friends have decided to put it off even longer. This was the exact purpose of sharing my journey. So that others can help themselves. I have given a lot of details because that is what I wanted to find when I was freaking out digging for info. I have so many friends who have said, "I haven't had a mammogram in two years, but I don't have any risk factors, so I'm ok." No! No you are NOT! I have ZERO risk factors. Cancer doesn't discriminate. It doesn't care how old you are, how many kids you have, or if you're a nobel prize winner. Cancer doesn't care.



YES!!

This is our accomplishment for the week


If you're new to the world of feeding problems, this is big. Really big! Not only is she drinking (something she's been battling with me about) but her tongue is in her mouth, not being used as a lower, lip. We haven't started feeding therapy yet. So proud of my girl! 

Communicating

Every one of the kids has a different way of communicating. Here's an example of where each of the kids are at.

Abel (combined ASL with some vowel sounds) "Mom. I want drink please." and "I want eat please." and "I want swing please." He mostly just requests his wants and needs. But the other day I was getting ready to give Audrey lunch, and Abel signed "eat Audrey table sit." Its nice to see he is starting to comment on other things besides what he wants.

Asher to Mom: "Want hug please." (Pointing to my lap, or Dad's lap) "Want sit please." To mom "Want Audrey hug please." and his new favorite, "Please cup please wash sink please." (because he wants to play in a sink full of water.)

Axel to Mom who is getting ready to go somewhere, "Mom. Beautiful. Love you." MELT MY HEART! Then, a bit later when we were ready to leave, "Bye! Have fun! Behave."

Angela, in the car on the way home from softball:  "Mom, today at school Sam (not his real name) was mad at me. I told him "Sam, Shit happens. Get over it."

They all make me so proud!

Friday, April 11, 2014

What makes me smile?

I have so many reasons to smile, who run around our house just loving life. Clearly, God put them here just for that purpose.

Like this guy. Our young man. He's grown so tall, and so cool. 


And these two, off to a teen dance with their friends. 

And all of these people, who were playing trucks on the floor

and this blossoming relationship between the daddy and the daughter who wanted to play too


For these two, who love music and "Head Shoulders Knees and Toes" more than anyone I have ever met.

And this guy, smart as a whip, doing things we couldn't have imagined one year ago.


And these smiling faces at breakfast

And when I just need quiet, and time away from all the smiles, and I wake up with this beauty next to me, I'm so very thankful for all God has brought us through.

Thursday, April 10, 2014

1 week post op follow up

So, I got all worked up over nothing. Yep. The Oncotype gene test wasn't done. Apparently in pre op my surgeon was just telling me about it, not that they were actually going to do it. If its going to be done my oncologist will be the one to order it.

I am being referred to physical therapy for just a couple of sessions. The lymph node removal under my arm - for which they have to move muscles out of the way - has some slight limited range of motion. Because they messed with the lymph system that puts a SNB patient at risk of lymphedema, so I've been referred to physical therapy for just a few sessions to improve range of motion and get lymphatic massage. (how fun, to get  your underarm massaged. LOL) But, I think this is pretty standard practice with my breast clinic.

Next week I'll be meeting with my oncologist to start setting up my radiation schedule. Discuss what hormone blockers I'll be taking, as well as whether or not I need to have my ovaries removed. I can't take Tamoxifen, which is the estrogen blocker that is most often given so the other option is to remove the ovaries and use a different drug. That and lose weight, because fat stores estrogen and estrogen is what feeds my cancer.

Other than that, all things are good. Incisions look fine. Small infected areas have cleared up without needing antibiotics or anything. Just get it all healed up so I can start radiation. 

The Cancer Coaster

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

Cancer causes crazy.

Cray cray.

Crazy pants.

Crazy Crackers.

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

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

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

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

Then I had a brilliant idea:

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

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

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

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

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

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

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

Stupid Cancer!

Tuesday, April 08, 2014

Feeding Update

If you followed my adoption blog, you know one of my biggest concerns about getting Audrey home was how to manage her feeding problems - or the huge mess created by them - on the plane. I don't think I have any videos of those first few day as she and I learned how to work with one another. Mostly it was me learning how she did/did not use her tongue to manage the food in her mouth.


After about the first week, we had our first breakthrough. Audrey was able to keep her tongue in while taking a bite. Within another day or so she was able to keep her tongue in while she chewed.
This video was around March 9th. Its also the first time she signed "more" independently and without prompting.


This video was taken on March 15th while we were still in Serbia.


Audrey has now been in my care for one month. She is closing her lips on the spoon, keeping her tongue in her mouth while she eats, and now is working on using utensils herself.


We have a long way to go, and the work is frustrating for both of us, but we're getting there. Whenever we bring a new child home, even when they're physically really small like Audrey now or Asher when he came home, we want them sitting at the table with the rest of us so they can see what eating at a table is supposed to look like. In the institution the children never have an opportunity to see how people eat, so how are they supposed to develop decent feeding skills? But it is clear to me that Audrey is noticing how everyone at our table eats and she is really trying hard.

The one area we continue to have major problems is drinking. Audrey is not drinking anywhere near enough fluids during the day. For awhile I was really pushing her limits, trying to get her tongue in when she drinks, but this just caused her to dig her heels in more and refuse to drink at all. I decided to let that go for now and just let her drink how she is comfortable and we'd work on it later. That has helped some but still she is only taking in about 1/4 of what she should be drinking on a daily basis. The problem with not drinking is most body systems don't work without fluids. I was starting to get really concerned and was going to take her into the doctor on Friday if she still wasn't drinking. Yesterday I decided thats it, she's not leaving the table after meals until she drinks her full serving of liquids at the meal. Yesterday was a day of struggle as she threw down the gauntlet, testing to see if I really meant business. Yes, dear child, I really do! (and that snow in the background? All gone today!!)

Yesterday was the first day since I got custody of Audrey that she's had an adequate amount of fluids. Today I had no problems getting her to drink while at the table, and low and behold, all systems are working again tonight. ;-)

She is one smart cookie, this one! I'm so very proud of her. Its stressful to move to the other side of the world, with people you can't understand, then have demands put upon you that you don't completely understand. But Audrey is persistent, and she enjoys feeling success. She's an amazing kid. 

Sunday, April 06, 2014

Thank you for curing my cancer

This is a hard post to write, because I don't want to sound ungrateful. I have a lot of friends. More than I ever knew, who care about me enough to send me their well wishes, prayers and positive thoughts. Friends who have brought us meals, helped with driving kids, or just generally cared for us. I am so thankful for each and every one of you! Every.single.one. Every text was received with thanks, even when I just didn't have the energy or emotional strength to reply. This cancer thing is overwhelming at first, and I'm still learning how to fit it into my life. Our lives.

When I was diagnosed with cancer I quickly found myself part of a group of people I never really felt the need to surround myself with: Cancer survivors and warriors. They warned me the "cures" would start coming very soon.

I love that you have all cared for me enough to send me information that will cure me. Every natural, holistic treatment, obscure clinics in Bolivia and other countries, teas, oils, nutritional supplements and drugs with questionable legal status. If you sent me a cure, please know I probably had 5 others sent on the same day that contradict the one you just sent me.

Of course, if I just pray enough, my cancer will go away because clearly I don't have enough faith in God right now. If I did, God would heal me without medical intervention.

I cannot even count the number of people who have told me *their* doctor is the best in the business and I should be going to him/her, no matter how far away that doctor is located. I have also lost count the number of people who have suggested I hold off on treatment to see if their 'cure' works first. Then of course there are those who know more than the medical community does about my cancer.

If you love someone who has cancer, please…please…please don't send them your 'cure'. Your loved one is already overwhelmed with information. Ask them if they WANT the information before you start flooding their inbox. Please don't even insinuate they have not done their own research on doctors, and try telling them your doctor is "the best in the business." You're doing it out of love, but telling them they aren't doing enough to take care of themselves. Please do not even suggest that someone delay their treatment to try an un-studied, unregulated treatment. You're asking them to play a very dangerous game with their lives and the future of their family.

Having cancer means making some really tough decisions about treatment, usually with very little time. How aggressive should I be? How many opinions should I get? It is really difficult to not second guess our own decisions with all the pathological and medical information we have. Please know that Dean and I care more about our family than everyone else except God. We will make our decisions accordingly, using scientifically proven treatments that have a long history of curing my type of breast cancer.






Saturday, April 05, 2014

Lumpectomy Post Op recovery

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

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

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

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

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

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

Thursday, April 03, 2014

Hello and GOOD NEWS!

Thank you so much everyone for your thoughts and prayers.

The first event on yesterday's agenda was the dye injection for the sentinel node biopsy, which was done at the breast center. This injection needs to be done in the nipple, putting radioactive dye into the breast that is later followed to the first few lymph nodes using a Geiger counter. I'm happy to report that although I had TONS of anxiety about this procedure, I didn't feel a single thing. Not even a tiny sting! The dye is infused with lidocaine so the entire procedure is not felt. It was a bit awkward that the radiologist doing the inject is Greek God hot. He also made a nice big black "X" over the lump for the surgeons reference later on.

Then I was brought over to the pre-op area at the hospital and Dean joined me there. I got all hooked up to the various things. My surgeon came in to talk to us, and I said, "Lets go! Get this thing out of me." He replied with, "We're gonna cut it out, chop it up, look at all the cells, and get you back to 100% in no time!"

I suggested they give me the happy drugs ASAP so I would just stop talking everyone's ears off about various dumb things. When the finally did I think I was in the middle of signing something. They next thing I know they were waking me up! LOL

Surgery did take a bit longer than the surgeon expected. As is common with this type of cancer it has a lot of little fingers and can be hard to get clear margins around the tumor. He told us there was a chance  I'd have to go back into surgery in a couple of weeks to get the rest of it.

After surgery he told Dean the first piece of good news! The preliminary pathology report done in surgery is that the lymph nodes are clear of cancer. YAY!!! Thank you God for this answer to prayer! This is a *very small* chance that cancer will be found when the full pathology report is done, but it doesn't happen very often.

Last night was pretty rough. I was taking percoset which doesn't agree with me very well. Lots of vomiting and that horrible feeling of just being out of it. I couldn't even sleep well because it makes me jittery. This morning I got up and helped Dean get the kids off to school, then Audrey and I hung out for the day. I only needed tylenol today. I'm a bit sore, mostly under my arm where they had to go through muscle to get the lymph nodes.

Then, just a few minutes ago, at 8:00 pm tonight, my surgeon called to tell us the margins are clear! That means I don't need another surgery!!! It also means as soon as I'm healed from this one - 4-6 weeks - I can start radiation. I will have this all behind me by my birthday the end of June!

Thank you all again for your tremendous amount of love, thoughts and prayers during this ordeal. Still a few weeks of trials ahead of us as we navigate fitting radiation and its side effects into our lives, but tonight I'm feeling SO much better about everything!


Tuesday, April 01, 2014

So many things!

There are so many things on my mind right now. This post will be all over the place, just like my thoughts are lately.

First, let me talk about stupid cancer. It is keeping me awake at night. My moods vacillate between angry, confused, sad, irritable, accepting…..and then there is nervous. I can't help but be nervous. In the scheme of things, a lumpectomy is nothing. I have had MUCH more invasive procedures done than this. But really, its the waiting for the lymph node biopsy that makes me nervous. If the cancer is in my nodes…….

Abel had an amazing day at school today. His best  yet. He had a really tough time while I was gone. Thankfully he has awesome staff at school who care about him, and understand how his previous environment caused so much damage that we all have to work so hard to fix. And that some of it may never be fixed. I pray the coming days continue to be good ones. I'm glad we've come up with a plan to keep his days as consistent as possible.

Angela and Axel have a teen dance coming up. Angela is SO very excited. Dances are her thing. Axel will like it too. He's not as excited as Angela because he doesn't get what I'm telling him yet. When we get there he'll be happy he's there.

Asher. The love. He's just a happy guy. He's vying for attention right now, soaking up all the extra he's getting as we make a point of letting him know his place in the family is so important. Now he's the big brother to a sister 6 weeks older than him. He is loving his role and very proud to show Audrey all the things big kids can do.

And Audrey. Oh this child! Every day she melts Dean and I into a puddle of mush as she bats her eye lashes and flashes her grin. She is pure light and joy. Our other kids are happy kids, but Audrey….she is different. I wish I could explain it to you. She twirls to music and showers us with hugs and kisses, or convinces us to sing "Head Shoulders Knees and Toes" for the 75,000th time and we do it because she's such a joy to watch when we do. She is understanding so many directions right now, and every day surprising us with something we didn't know she knew! We have found it works best for Angela to go to bed first so she can fall asleep before Audrey comes in. With that came the discovery that Audrey gets a second wind in the evening when its just her with her mama and Papa, and she is hilarious to watch.

I have found the last few days I've been a bit irritable, and as I stop myself from snapping at someone I wonder where this irritability is coming from. Then I go on the breast cancer forums to discover I'm not alone. It is just part of the emotional journey through breast cancer. I still can't believe I am typing those words. Breast cancer. Two little words which cause my stomach to twist into knots and bile rise in my throat. Words that cause a tear to roll down my cheek. Even as I refuse to claim parts of it, I know the story is already written. I want to turn to the last chapter to see the ending, but the pages have been torn out. I can only know the outcome as I experience each event.



Saturday, March 29, 2014

Sentinel Node Biopsy

Next week when I have surgery I'll also be having a Sentinel Node Biopsy.

First I'll go to the breast center and will be injected with radioactive dye. Then they'll take me over to surgery to remove the tumor. They'll also use a geiger counter to follow the radio active dye to the first lymph node to biopsy it.

I came up with a brilliant question: "How do they inject the dye into the breast?"

I don't think I will be be asking anymore questions.

"The dye is injected through the nipple. You will be given a local anesthetic but there will be some discomfort."

What the…WHAT????

Through the nipple??? Ummm excuse me? That is a one-way orifice! Things don't go "in", they only come "out".  OUT PEOPLE!!!

Who came up with this idea? "Lets get a woman with breast cancer, and put a needle into her nipple, inject blue radioactive dye, then chase it around with a geiger counter. Yes. Yes lets do that!"

For your viewing pleasure, I present to you this one minute video titled, "Sentinel Node Biopsy"


I am not at all worried about surgery and being put to sleep. No. No instead I am worried about the DYE being injected before hand! I want a sedative. Now would be good.

Ok. I get it. Just like labor and delivery, thousands of women experience this every single day and they live through it, and in all likelihood I will too. Yes, I get that. I just don't really want to be one of those thousands who experience this biopsy. I don't want the "badge of honor", I won't want the battle scars. I just want it to go away.

Stupid cancer. 

Thursday, March 27, 2014

Audrey: One Week Home

I suppose, from the  last few blog posts, it seems as if I'd be laying in bed, hiding from the world as I come to grips with the fact I have breast cancer.

BWAHAHAHAHA

Who has time for cancer????? Certainly not me! Not us!

No, we have been enjoying this new little person who just waltzed into our family and is making herself at home. I cannot even begin to describe the light and joy this child has brought with her. *Everyone* in the family is enjoying her presence. Even Abel, who likes us to think he's not.

Our first night home Axel, Audrey and I all slept all night. That night I sank into our bed around 10:00 pm. I remember thinking "Oh man, I love my mattress. I love my leg pillow…." and the next thing I knew it was 6:00 a.m. and Dean was getting the kids up for school!

We jumped right back into our routine that day, with me doing breakfast for the kids and Dean putting everyone on the bus. Our course, our lives changed that day too.

I was so excited to discover I could get Audrey's hair into a pony! She left it alone all day long.


Asher is torn between wanting to be a big brother and help Audrey...


And wanting to go back to babyhood a bit. 

Audrey is making SO much progress in many areas. Because she spent 9 years always hungry, stealing food is a big problem. For the first few days, when we prepared meals we had to keep the food out of reach until we were ready to eat. Then one day she just didn't seem so anxious anymore. Now she waits patiently by her chair, not bothered by the fact the food is sitting out, right in reach. 

Audrey has also made HUGE gains in her eating skills! She is now using her lips on the spoon and learning all about using a fork and spoon. She'll be starting feeding therapy very soon so we can work on fine-tuning those skills.

Angela is really loving playing older sister to Audrey. The biggest adjustment for her has been that she cannot talk all night long. From Audrey's first night home Angela has slept quietly all night, without talking and keeping everyone up like she normally does. She and Audrey sleep peacefully all night long. 

It took several days before Abel seemed to notice that Audrey was in the house. This goes back to his inability to notice people unless they serve a purpose for him. But Audrey is hard to ignore, especially when she comes and sits herself on your lap! His facial expressions when this happens are priceless, and I hope to one day catch this on camera. He has been very careful with her which has been good to see. I moved all the toddler toys out of the boys' room and into the girls room so Audrey can play with them. The day I did this, later that night I discovered them all back on the shelves in the boys' room. Abel was not happy I moved things around. These are toys he doesn't care for, but he is very particular about where things go, and I had moved them! We repeated this several days. 

Axel had two weeks with Audrey in Serbia, so she's not so "new" to him anymore. Besides, he is a cool teenage boy now. But as he does with Asher and Abel, he will voluntarily help Audrey with her shoes, or getting her jacket on. Axel is a very good big brother to all the kids. 

Audrey does NOT like the dogs! The first time she saw them we experienced the girl's shriek for the first time! Oh man. Shatter glass, she can! She spent a few days changing direction if she realized one of the dogs was in her path, but now she will walk past them, and even push them out of the way a bit. Dudley is exceptionally tolerant of her, patiently laying his head on her lap even as she screams. Its much less "fear" now, and more "mad" that this dog is so persistent. LOL I have seen her very carefully trying to pet Dudley's soft hair, and I'm sure before too long she will fall in love with him. Zurri? Yeah she avoids little kids unless their face is messy with food. LOL The two big dogs are LOVING having a kid in a high chair again, laying beneath her to pick up all the dropped food. Roman is a bit leery of Audrey still, probably because he is a small dog and her reactions are not predictable. 

Audrey has mad a couple trips to the grocery store with me, and has learned how to walk with me holding the cart. One day I had to make a Target run with all the kids. Everyone did great, even Audrey who wasn't thrilled to be walking because she would prefer to be carried. Sorry Audrey, you're nine, and you'll have to walk around the store. Once she realized I was not going to carry her she did great and had fun walking with all of us. 

Audrey is smitten with her daddy and the feeling is mutual. She is such a happy, sunny, delightful child that it is hard not to get sucked into holding her all the time. She is learning to play with the other kids, and she and Asher can often be found leading one another around by the hand. We are making a conscious effort to spent time with the other kids 1:1, not only because of the addition of a new sister, but because of the general stress going on in the household right now. Next week will be difficult for everyone, Angela in particular. 

All in all, this first week with Audrey could not have been better. 

Wednesday, March 26, 2014

Telling My Child I have Cancer

Of the five kids here, Angela is really the only one who has the language to understand about Cancer and what is ahead. Axel will understand that mom is "sick", as will Asher and Abel. Audrey is not even close to being able to comprehend at this point. I decided Axel will do best having things explained to him as they happen. But Angela…Angela knows something is up. The hushed whispers, the tears, the anxiety hanging in the air. I don't think its possible to hide cancer from my kids.

I didn't really know how to do this. I didn't plan a certain script. Angela is 17 but developmentally around 7-8 years old. Its hard to predict what she will understand about this so I figured simple facts and she'll ask questions as we go through this journey.

Today Angela and I went for a drive. A couple minutes down the road I turned down the radio.

"Hey!" she said, annoyed that I was messing with her tunes.

"Honey, I want to talk to you about something really important. Can you talk with me for a minute?"

Her eyes got big and wide. She folded her hands in her lap and turned to look at me. "Ok, lay it on me mom!" she said.

"Angela, do you know what Cancer is?"

"Huh?"

"Have you heard of the word Cancer before?"

"Yes."

"Do you know what Cancer means?"

"You die." she said, blinking big. Then, counting on her fingers, "Grandma Spring having cancer and she died. Rubee having cancer and she died. Shep having cancer and he died."

I took a deep breath, swallowing hard to control the tears that were already threatening. "You're right. Sometimes people and animals who have cancer die. There are lots of different kinds of cancer. Inside our bodies are tiny little pieces called cells. They're like puzzle pieces."

"I have Down syndrome. I have an extra puzzle piece."

"Yes, that's right. Cancer is a different kind of puzzle piece. Inside of us are our organs, like our heart and lungs…"

"and my esophagus."

"Yes, and your esophagus. All those parts are made of cells. But sometimes those cells don't grow right. They get all confused and they start to grow wrong. Cancer means having mixed up cells in your body. We found out that Mommy has cancer."

"You will die?" she asked me, her eyes like giant brown saucers.

Oh dear God….this is so hard.

"No honey. Grandma had a kind of cancer that the doctors didn't have medicine for so she died. But I have cancer in my breast. Next week I'm going to have surgery and the doctor will take the cancer out."

"You get an IV?!" she asked excitedly, because she loves all things related to the hospital.

"Yes, I'm going to have an IV. The doctor will take my cancer out, and then I will come home. When I'm all better from surgery I'm going to have special X-rays every day for a long time. Those X-rays will find any sneaky cancer cells that might be hiding in my body. The doctor says I'm going to be just fine."

"Ok. You not dying?" she asked?

"Nope. Not dying. Just surgery."

"Ok. Great Mom! Can you turn the radio back on?"

Nobody should need to have this talk with their kid.

Stupid cancer.

Meeting with the Surgeon

Monday afternoon

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

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

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

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

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

For real?

Stupid cancer.

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

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

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

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

I have two types of cancer:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Stupid cancer. 

The Space Suit

Monday morning

About few months ago I had this very strange dream. I decided it came from watching the movie "Gravity" twice in one weekend, because in the dream I was in a space suit, holding on to joystick-type handles, my face looking through a mask. But this space suit was really weird, and I could feel an odd suctioning on my boobs, as if I was hooked up to a breast pump.

Fast forward….

I had to drive to the other side of the city to have this special breast MRI done. I've had MRI's before and they're not really that big of deal. I was told this one would take 45 minutes and I would have contrast dye that would make anything else in my boobs light up, including possibly lymph nodes where the cancer may have spread. Er…something like that.

The tech took me back. It was really early in the morning and the place was totally empty. Like, NOBODY was around! She handed me two gowns and I removed everything except my socks and panties as I was told, then she brought me back to the lab area.

First step was to start an IV. They first do the scans without dye, then with dye. Once the IV was in place we went into the procedure room with the machine.

Oh my word, the machine!!!!!!!

When I looked at the table I wondered how I would get up onto it. It was at a very odd angle, then I realized why. You have to climb up onto the thing, and hang your boobs through two holes. (one hole for each boob. ) No really. I am not even kidding a little bit. Heres how it looks when you lay down:

I was lucky, I was given handles thingies to hold, just like in my space dream! But do you see the person in the drawing, and where her boobs are hanging? Yeah, it takes a bit to get them positioned just right, with the tech doing lots of rearranging of boobs to get all the tissue into the right area so it shows up on the scan. Lots of moving and manipulating of my boobs going on. My friend L, who is living with breast cancer, told me "Say goodbye to your modesty. It only gets worse from here." Lovely! So anyway, all the that moving of my boobs was pretty uncomfortable because I was still sore and bruised from the biopsies. Then the tech put headphones on me so I could listen to a local radio station morning show. (She let me choose what I wanted to listen to.) But really, it was barely loud enough to hear because MRI machines are so loud. She also put a pulse oximeter on my finger. 

Loud, continuous noises don't really bother me, and I will take any opportunity for a nap, so since I was face down with my head in a mask just like my dream,  I drooled my way through the MRI. 

At one point the tech said into the headphones that she was starting the contrast dye and I might feel……  Yeah I fell back to sleep so I don't know what I was supposed to feel.

Eventually I felt someone tapping me, "Leah? Are you ok????" 

Good thing for that pulse ox or she probably would have thought I'd died or something. No. Just me, taking a nap. 

The tech helped me climb myself and my boobs out of the contraption and had me sit on the side of the table for a few minutes because she thought I looked dizzy. I wasn't, I was just groggy from my nap! LOL Now it was time to race home for Dean to get to work on time. Later I would be picking him up and we would go together for the consult with my physicians who I hadn't yet met. 

Tuesday, March 25, 2014

The Waiting

Sunday

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

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

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

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

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

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

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

"Hello?"

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

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

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

"Yes, Dean."

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

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

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

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

So much trouble breathing lately.

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

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

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

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

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

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

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

I had to tell Dean I have cancer.

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

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

I have cancer.

For real.

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

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

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

And he held me while I cried.

So many tears.

If only I could sleep it all away.

I have breast cancer.

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

Breast cancer.

In me.

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

Shock.

Disbelief.

Emotions I have no words for.

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

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

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

Monday, March 24, 2014

Yesterday I was fine, today I have cancer

Thursday

Audrey saved my life.

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

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

Dean insisted on coming along for my 9:00 appointment.  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.vI 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.

Saturday, March 22, 2014

Welcome Back!

So, we took a nice little hiatus there, didn't we? Now that Audrey is home and our family is learning to be "one" with each other, its time to get back to blogging about it here! I can't wait to see what life has in store for us! If you're new here, I hope you'll stick around. 

Saturday, February 01, 2014

Lord Help Me

I have recently been forced to make some changes in my life. At the risk of over-sharing, I'm going to disclose some of those changes for the purposes of an educational blog post. We'll consider this a public service announcement. Or something.

First, the back-story:

The week before Christmas there was some horseplay happening at our house that involved one of my adult children. (cough cough Tyler cough) The little kids have this sensory toy.

When it is straightened out, it's about 3ft long. It also happens to vibrate. Noah picked it up and asked, "What is this thing?" So I turned it on. The fact that it vibrates turned into much joking around about what type of "toy" I had bought for the kids. Noah tossed it over to Tyler. Tyer, however, has a lot "sensory issues" and kind of freaked out when the vibrating thing touched him. His reflex was to push it away. You'll notice on the picture the hard plastic end caps. One of those caps hit me square in my front tooth, knocking it out.

!KNOCKING IT OUT!

Now this tooth is actually one that was injured when I was eight years old. Two years ago, while I was in Serbia, my good friend, who just happens to be a cosmetic dentist, put new crowns on all my front teeth for significantly less money than what I had been quoted here in the US. So, when this accident happened over Christmas I was SO upset! My beautiful crown was wrecked! Not to mention, I had just lost a tooth!

Lucky for me, the teeth on either side of it held the disconnected tooth in place.  I thought I could wait until I went to Serbia to have a new tooth implanted or something. Unfortunately, a couple weeks ago the tooth right next to it abscessed. The swelling caused everything to move around and my other teeth would no longer hold the broken tooth in place. I had no choice but to get it fixed. After suffering several days with my face being hugely swollen and throbbing with pain, I had two of my front teeth pulled. ( I still don't know if it was the dentist's knee I was holding or Dean's. I guess that's another blog post.) Unfortunately there was so much swelling that I had to wait nearly a week before having impressions made of my mouth, which was needed in order to get some temporary teeth. I didn't leave my house for days, so embarrassed about having this gaping hole in my mouth!  I finally got my new, temporary teeth this past Monday.

So, I have spent the last several days learning how to talk without a lisp, how to eat (can't eat with them in) and generally learning to live with my new teeth.

And now for tonight's episode:

Tyler is here again. (are you sensing a theme?) It was 10:45 pm when he announced, "You know what I could go for? I could go for a Blondie!"

If you don't know what a Blondie is, you can probably find them on Pinterest. We happen to find them at our local Applebees.

Before Tyler could finish his sentence I was on the phone to Applebees, placing an order for curbside pick up for three blondes. Tyler and I jumped in the car to go pick them up.

On the way I said, "I should stop in the convenience store and pick up juice and milk for the morning."

I ran into the store, grabbed the necessary items and went to the counter to pay. I was still wearing my tight driving gloves, which made it difficult to get my money card out of my purse. So I did what I would always do, and bit the tip of my finger to pull the glove off my hand.

And my teeth fell out onto the counter.

I quickly picked them up and announced, "Oh look! Teeth!" and popped them back into my mouth.

While the clerk picked her chin up off the floor I made a mad dash for the car.

************

My side of the family has this sneezing thing. We sneeze many times in a row, very hard. This week I learned that when you sneeze into your elbow, your elbow will not catch the teeth when they fly out of your mouth.

***********

After baby #3, I had to have some...ahem..."plumbing work" done to repair the damage done from the babies. Apparently 17 years is long enough and I need to have some of this work re-done. I am just getting over a horrible respiratory thing that all of us passed around.  (Yes, at the same time I was dealing with a swollen, infected face, I was also coughing up a lung.) I still have a residual cough. I have learned that I cannot cough and walk at the same time. One hand needs to hold my teeth in while my legs are crossed to keep everything else in.

Friday, January 31, 2014

Mom

Asher is awesome at getting our attention. If you're familiar with attention-getting techniques for people who are deaf/hard of hearing, he has "the wave" down pat. Sometimes he uses a sound with the wave to get our attention. For those who are new, Asher is hearing.

We've been working for several weeks on getting Asher to say "Mom" instead when he wants my attention. Twenty times a day we prompt him. I pretend to be oblivious while I wait for him to say it. The same routine, over and over, day after day, in hopes that he'll get it.

Today Abel, who is hard of hearing, came up to me, tapped me gently on the shoulder and said, "Mom."

I'm sure he wondered what he did to make me cry.

Sunday, January 26, 2014

What if he doesn't want to learn

Abel has been home for 9 months this week. For nine months we have worked on his learning to "be" in the world. In the midst of that we have also worked on learning some academic related things, like letters, colors, etc.

Let me just say, Abel is one stubborn boy!

But is he really? Maybe learning to be in the world is all he can manage right now? Because really? He was so far behind in the game there has been A LOT for him to learn. He has learned and knows how to live at home now. He totally gets the routine of our life. He is the most helpful of all the kids, the first to grab grocery bags out of our hand so he can put stuff away. He is the "neat freak" and wants things put away in their correct places (most of the time anyway.) He is a stickler for doing this the way our routine dictate they should be done.

But just once, try to get him to sit down with the iPad and play with a learning app. OH THE TEARS! Unlike Asher, who loves to sit and watch over someone's shoulder, Abel avoids the the iPad at all costs. We have a new computer with a touch screen monitor. If I put him on kid websites that are all cause and effect...yeah...its not happening. He cries and cries, "All done. All done" he cries. If I sit down with him at the table and we work on a fun activity together, he can't stand it. He wants nothing to do with it. Knowing he has MAJOR attachment issues, I try to set things up that he can do without my 1:1 attention. He will put his hands under his legs and cry as if someone is torturing him.

When Axel came home, by the time we arrived here in the US he knew half of his letters and most of the letter sounds. They are very different kids. They are both very intelligent, but they are driven by different types of learning styles. Axel is all about figuring things out. We can't leave any electronic gadgets sitting out our Axel is likely to reprogram them, erase them, or something along those lines. I have had to change the settings on one of our iPads several times because he keeps going into it and messing with stuff. Very typical behavior, of course, although he'll do it no matter how many times we tell him not to.

But Abel is different. Abel is driven by movement. The faster, the harder, the better. He wants to move hard and fast. I have tried incorporating this  need of his into learning activities. Like RUN to the other side of the room, drop a letter into a bucket with the matching shape, etc. No go. That is learning, something he is resistant to.

Unless I bring out the food.

Food is still Abel's biggest motivator. When the right foods come out (something really chewy to give him oral input, like gummy bears, alternating with something crunchy like pieces of cereal) He is suddenly able to match colors, and can even identify red, blue and yellow. When asked to do a simple puzzle, he normally slams the pieces around mad that he has to do it, but shown his edible reward he easily puts them into the right places, even gently...when he's told no treat if he does it with roughness and slamming.

Now Abel is learning how to be in school. We've been slowly working him into his school day, with me having as little involvement as possible. At the moment we're addressing a critical behavior that I think within a couple of days we'll have extinguished. (post coming up about that) Right now he's still only there for a couple hours a day, but by the 10th he'll be in school full time. So far, so good!


Saturday, January 18, 2014

Photo Catch Up

I take lots of pictures with my phone, but usually forget to upload them to my computer. (mostly because I hate using my droid with my mac. I want my iphone back.) 

Loving having a Papa!

Dean's parents gave Axel this Thomas the Train travel set for his birthday back in August. He loves it. He takes it out and very carefully spreads it out on the living room floor, then lines up all the trains just so. He puts the helicopter on the landing pad, then acts out all kinds of scenes. He does this most on Friday or Saturday nights when the little boys go to bed early and won't pester him. He plays with them for a coupe of hours, then when he is done he very carefully folds up the mat "just so", and puts all the pieces back in the box, exactly where they go. Then he puts it back in his hiding spot. I just took these pictures last night, and you can see how he's taken such good care of it all this time. He is like this with all his toy! 



The kids were playing in the sensory room with us watching on the camera. We couldn't find Asher in the room so we started panning. Asher found US! LOL

Abel's runner Laura sent him a gift. He loves it! 

Roman is always taking the small toys he can find around the house and dragging them into his kennel. Apparently this puppy was thirsty too. 

A bunch of busy elves on Christmas Eve.

Another girl outfit has found its way into the  house! I can't wait until J is here to wear it!

One day the little boys were being particularly rambunctious but I needed to make dinner so I brought the tunnel upstairs. Later when the went to bed it was folded up to be put away. Except Dudley discovered it and figured it must me for him.

Tuesday, January 07, 2014

Making complicated things easy

I have lots of little systems set up in the house to simplify things a bit when I'm not around and there are other caregivers here. Dean likes when I have things set up and easy for him, and we have PCA's (Personal Care Assistants) here periodically who need to be able to easily see what's going on. I try to make everything as visual as possible in case someone can't reach me if there is a question. Like, when I go out of the country to bring another Spring home!

One of the systems I have set up is for medication dispensing. Three of the kids take an assortment of medications and vitamins.

I know all the information, who gets what, and what dosages in my head. But for Dean, or other caregivers, opening this every morning can be a bit intimidating! (this is only 1/2 of the bottles!)

I have needed a way to dispense medications for a month at a time. When I went to Serbia to bring Axel home it was easy because Angela was the only kid here. With each trip to bring home a new child I have had to streamline things even more.

I've tried lots of different medication dispensers. First there was this one. The days click together so you can take just one day with your, or a full week, etc. (this is necessary for us.) But, noticed they are taped shut? Yeah they don't stay closed very well! Dispenser fail!


Here is a single dose dispenser. It works well enough, but 
they don't stack very well so they fall all over the place. 

This one stacks well enough, but you cannot
separate the days to take meds with you.



This has been my favorite. 
It is clear so I can easily see what meds
haven't been taken. 

Each day can be removed to take with you, or I can take an entire week and not have the individual cases falling out all over the place. 

It stacks well.

What I don't like is that the print the stickers rubs off after just a few weeks. When I first looked
the company didn't sell replacement stickers. Now I can't find this dispenser in stores anymore. Also, the sliding lids do need to be taped when I take individual days with me, otherwise they slide open, spilling pills everywhere. 

So, I'm looking to re-do my medication dispensing system. It needs to have the following features:

1) stacks easily without falling all over the place. This means it must be perfectly FLAT.
2) No rainbow colors. I need something that is solid color, but available in multiple colors. For example, I could have one set that is all green, one that is all blue, one that is all red, so each kid has their own color. Just clear is ok, because I can use nail polish or something to color code them.
3) the lids need to be secure so they can't accidentally open in my purse.
4) I need to be able to take a full week with me and the individual days  all stay together.