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!"

Wednesday, July 30, 2014

Take that, cancer!

Its done! Chemo is done!!

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

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

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

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

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

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

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

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

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

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

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

Wednesday, July 23, 2014


Originally posted December 2009


When Angela was born, and while my belly was being closed from an emergency c-section, a team of flight nurses quickly prepared her to be airlifted to another hospital 70 miles away. It was during that chaos that the attending pediatrician told her dad, and my parents, that she suspected Angela had Down syndrome. I lay oblivious on the operating table, joking with the doctors about doing a tummy tuck "while you're in there."

A few minutes later, her dad and my parents came into the room I had just been wheeled into. My parents stood at the foot of the bed, and Angela's dad came to my bedside. "Is she ok?" I asked.

"She's fine." he said. But as he said it I glanced at my parents and saw a single tear rolling down my dad's cheek. Never in my life had I seen my dad cry before.

"No she's NOT! What's wrong?" I said.

Angela’s dad struggled to find the right words. "Well, they think she might have a little bit of Down syndrome."

Just as I was saying, "There is no such thing as a little bit!" in walked the flight team, with Angela in an isolette. They removed her and placed her in my arms. I couldn't see her face because they were bagging her to keep her breathing. All I could think to do was turn her hand over and look at her palm; at that single crease that held the truth of her diagnosis. There it was, in all it's glory, deep and plain as day, leaving no room to question if it was a true transverse palmar crease or not. It was. I saw it.

There is one picture of me that day, holding a very tiny Angela (just 4 lbs) with a temperature strip stuck to my forehead and a very dazed look on my face. I don't look like I was crying, and I honestly don't remember if I was. I'm looking into the camera like a deer in headlights. I HAD just had a c-section 30 minute prior. I wonder who took that picture? It wasn't my parents, or Angela's dad. Maybe a nurse? I don't know.....

Anyway, I only held her for a minute before they took her away, loaded her onto a helicopter, and flew into tornado weather to another hospital with a NICU. Angela's dad followed in the car, and my parents were left standing there with me, noot sure what to say. How do you comfort your daughter in a moment such as this?

"Now it all makes sense." my mom said. "All those kids with special needs you were always bringing home. All those babies you noticed that you didn't know had Down syndrome because you were just a kid, but I knew. Yes, it all makes sense."

She went on. "She's here to teach. She's going to teach everyone along the way that what they thought, and what is supposed to be, is wrong. It doesn't matter who they are, she's going to teach them."

Angela has held true to that prophecy.

First, she taught me about control. I don't have it. You don't have it. None of us have it. We're not in control of our destiny. He is. We can try to manipulate it all we want, and yes, we have free will, but our destiny has already been determined. Angela was destined to be my child, and I was destined to be her mother.

Over the years Angela has taught teachers and educators in general to think outside the box that is "Down syndrome". That not all kids with DS are alike, that there is no such thing as, "Oh they're all so sweet!" Yeah...WHATEVER!

She has taught me advocacy. I *thought* I knew what the word meant, and I thought I was pretty good at it with my boys. But when Angela came along I discovered what the word really meant, and that I had a lot to learn. By the time Angela was three, I was changing the way our small town school district approached special education, and by the time she was five I was changing yet another. When she was seven I learned I needed to advocate not only for her, but for me, as a mother, too.

But the biggest area of teaching Angela has been involved in is the medical system. She has broken all their rules. The rules say, "When you have a stroke, it looks like X on the scans." But in Angela's case, the X isn't there, but all the symptoms area. The rules say, "When you have a seizure, it looks like X on an EEG." But Angela broke that rule too, and after two years of my questioning seizure activity, and two years of normal EEG's, her neurologist finally got to see one of her seizures for himself. "Treat the symptoms, not the EEG" is the rule to follow, not the other way around.

Angela taught her primary surgeon that the rules of wound healing were meant to be broken, and that Angela has her very own timeline.

Angela has taught many doctors that the old phrase ­"When you hear hoofbeats, think horses, not zebras" does not apply to her...... EVER. She is full of zebras! In fact, I'm pretty sure she's breeding them somewhere. I have learned that when a doctor says something like, "Well, in very rare cases....." That I should start researching those cases, because that's where we're going to end up.

But I have to say, the most amazing thing Angela has taught all around her is JOY. Pure, unadulterated JOY. You can see it when she sits down to an order of french fries, and you can see it when she hugs someone she loves. It is infectious. She melts into you like a warm knife in soft butter, cutting straight to your heart. She delights in the world around her like nobody I have ever met. Today after she threatened to arrest her doctor, I watched her, heavily sedated, grin from ear to ear as a nurse appeared out of nowhere with a set of toy handcuffs. The smile was pure JOY.

Yes, I get frustrated with her, just like every mother does. Yes, I get tired of the constant repetition of her favorite game (jail!) or her favorite topic each day. Yes, I want to pull my hair out when she swears or sticks out her tongue for the 500th time that day. But when an opportunity arrises to watch Angela experience something I know she's going to enjoy, I'll go to the ends of the earth to make sure it happens. Because seeing her delight in something like watching a cousin's wrestling match or basketball game, or a dog show, or riding a roller coaster....anything that makes her clap her hands in excitement....does something to my heart that nothing else cane come close to duplicating. Angela has taught me to seek joy in all things.

So, as my mother prophesied 13 1/2 years ago, Angela has indeed taught people a thing or two along the way, and she is my favorite teacher.

9 years ago today

 photo 100_0480.jpg

It was a surprise. Nobody knew it was happening but us. Sometimes we're fun like that!

There are no words to express how much you mean to me Dean.  I love you babe!

And on this day, while we were saying "I do!" baby Destany was placed in her mother's arms for the first time. She is 9 years old today. Please hold her mom Melinda in your prayers today. She misses her baby girl terribly.

Tuesday, July 15, 2014

Phone Calls

Today was about being on the phone, playing tag with various service providers.

First was the genetic counselor. I need to find out my risks for breast cancer, as well as whether or not I have the BRCA 1 and/or 2 genes. These are the genes that cause breast cancer as well as several other types of cancer. While talking with the nurse she mentioned "You will also be going over your stroke risks." Umm yeah. Significant family history of stroke. We'll be meeting on Monday next week.

Next up was Angela's insurance provider. You know, she is 18 now. Things change at 18. Who knew? She has been assigned a TBI/Stroke care case manager who will be coming out for a visit. I don't even know exactly what for. With all the changes that have been made to healthcare there are a lot of services being cut so I hope it is nothing related to that!

And then there was the call to Children's Hospital of Boston. If you're new here, we live in Minnesota but Angela sees a specialist in Boston to manage her Cricopharyngeal Achalasia. This is a very rare disorder and there is nobody local who will treat it so Mayo sent us to Boston. Anyway, Angela needs to be seen again. Because it is out of state, it takes quite awhile to get this all arranged so I'm starting on it now with hopes of having her there in October or so.

I also called Amplatz Children's hospital to get Audrey scheduled for her MRI. Axel has an upcoming check up with his spine surgeon at Shriners in Philadelphia, and we need to get this done to determine if Audrey needs to be seen at the same time. I'm hoping to get this done around the first week of August. If only I could have gotten it scheduled, but it never seems to be that easy. I should hear back from them tomorrow.

Last were my two surgeons. One is the surgeon who did my lumpectomy. I wanted to talk with him about a mastectomy and get all the necessary details so I can make a decision. I'm waiting for them to call me back with an appointment date. The other is the plastic surgeon to discuss options for reconstruction. I have had work done by her before and I really like her. I've also seen pictures of her breast reconstruction work on women who had radical mastectomies done and I like what I see. Especially considering if I decide on mastectomy it won't be a radical procedure, meaning I would have much "cleaner" site to work with as well as more skin.

The afternoon was spent with the kids at therapy and getting some much needed stuff done, but thats another blog post! 

Monday, July 14, 2014

Urgent: Hope Scarves

A few weeks ago I posted this picture of Angela and me on Facebook.

Everyone commented on the beautiful scarf I'm wearing in the picture. And really, it truly is a beautiful scarf.

My scarf was sent to me free of charge by Hope Scarves

 Of all the headwear I purchased for myself before I lost my hair, this FREE scarf is the most beautiful! If I am feeling the need to wear something on my head, this is my first choice. Always. And I *always* get compliments on it.

But Hope Scarves didn't *just* send me a scarf! They sent me HOPE! Another breast cancer warrior who has gone before me, who is now a survivor, took the time to write her story and personally choose a scarf for me. It was boxed up and sent, a long with a beautiful handwritten card filled with loving thoughts and the story of the survivor who sent me scarf, along with a direction sheet that included several different ways to tie my new scarf.

Hope scarves gets a lot more referrals and requests for scarves than they are able to satisfy. However, they have the opportunity to win a $5,000 grant from the StyleBlueprint Challenge! Hope Scarves is currently in a VERY CLOSE 2nd place for this grant in a voting contest that ends tomorrow!  Knowing how good I feel in my scarf, and knowing so many more women like me would benefit I have to ask you to vote!

Here is what Hope Scarves can do with $5,000:
- Send 150 scarves and stories to women facing cancer
- Host writing workshops for survivors to help them write their story and reflect on their journey
- Spread the word to more hospitals with promotional packets so more women learn about our FREE head covers and stories of hope. 

I know there are a lot of you reading tonight. You have followed my journey for a long time and you know I don't just post any 'ole contest. Please, if you could take 60 seconds to follow this link to vote. There are only 24 hours left to vote! That means I need each and everyone one of you to actually click the link and vote JUST ONE TIME! Please, if you would do this for me, for others coming behind me, comment here so I can personally thank you for taking the time to support Hope Scarves. CLICK HERE TO VOTE 

Making tough decisions is tough

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

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

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

And here is where my thought process has changed.

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

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

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

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

Saturday, July 05, 2014

So you want to visit an orphanage...

Today someone sent me a link to this Huffington Post submission about Voluntourism. I'd like to talk about this a bit.

Several years ago - before I truly understood or had tangible experience with children who have attachment disorders - I had the opportunity to visit an institution in Serbia and share my love with some kids who were lacking in that department. I was so excited!!!! We traveled, we hugged kids, we showered them with affection, I fell in love with a couple. It was a very rewarding experience! FOR ME!

But what about those kids? Did they benefit from our exchanges?  They sure seemed to enjoy my affections. In fact, they LOVED our interactions. Most latched onto me with a death grip, refusing to let go. I remember four kids from one room fighting like mad for the prime spot in my lap. They WANTED my attention.

Now, lets look at this from a different perspective; that of a child raised in an institutional setting with numerous caregivers. I will use my Asher as the example child.

Here is what I wrote during Asher's adoption 2 1/2 years ago:

Asher stands in the middle of the room or lays on the floor, eyes cold and distant, unfocused, lost in his own world. His world, the one in the institution, has nothing for him so he has disconnected to find somewhere better in his mind. He doesn't rock like many of his roommates. Instead he stands frozen as if a statue. If he lays on the floor he is still. Silent. Sometimes he finds a thread from someone's clothes, or a stuffed animal that still has it's tag, and dangles it before his eyes, occasionally using his other hand to give it a twirl. This is Asher's day....every day....for every waking moment.
And then this woman the caregivers call "Mama" comes. Me. I appear in the door of his room. He has learned that my appearance means a change of environment. He runs to me with a half grin, his head turned away but watching where he's going out of the corner of his eye. He wraps his arms around my neck for a hug as I pick him up, then squirms to get down again, taking my hand to guide me down the hall to the playroom.
But don't be fooled by his eagerness! Asher isn't connecting to me yet. I am but a tool to get him out of that prison of monotony. He will gladly take the hand of any caregiver if it will get him the same thing. He's indiscriminate.

I was but a tool to Asher then. Every new caregiver who showed up to work was viewed the same, but at least they were the same faces every day. For the most part the same person got him up and out of bed in the morning, giving him breakfast and getting him dressed. Likewise, most of the time the same staff person put him to bed every night, bathing (hosing them down, really) getting pajamas on and throwing a blanket over each child. The staffing was consistent and usually predictable for him save for the occasional staffing shuffle that happened between rooms to cover when someone was out sick or on vacation. Children build trust when their lives and caregivers are predictable.

But what about the volunteers who came to visit the children?

Every year hundreds of volunteers from the US raise money and board planes, traveling to countries around the world to care for their orphans. They attend trainings to learn how to conduct themselves on the trip as well as things they might see and do while there. They're told this will be a life-changing experience. So rewarding. So fulfilling. Yes, it absolutely will be…for the volunteer.

They arrive at their target facility, eager to shower the wanting children with love and affection, sometimes including candy or trinkets to win the child's trust. "I'm safe. See? I bring you good things!" They spend a week or two helping with various tasks around the facility while intermittently interacting with the kids. On their blogs and social media websites they post pictures of their favorites. "Look at Lily! Isn't she sweet? She and I have really bonded this week. It's going to be so hard to say goodbye. I hope I can come back next year!"

And then they leave.

The very children who they formed "bonds" with are now left wondering, "Where did that good person go? Every day for a week he was here. I sat on his lap. Now he is gone. I will never trust another person again."

At some point the children are no longer able to form bonds with anyone, including the the families who come to adopt them. 

Asher has been home 2 1/2 years now. He is still 100% indiscriminate with his affections. He will walk away with an absolute stranger. He will climb into the laps of people he's never seen before and snuggle up just like a baby monkey.  Last night at our 4th of July celebration before we could blink he was in the lap of my friend whom he had never met, arms around her neck, emotionally looking like a newborn. We're exhausted from the constant correcting. And it IS constant!! We've had three incidents with strangers just in one trip to the grocery store today. Two and a half years and probably a lifetime ahead of us.

In Asher's life prior to having a family he learned that people come and go. It is not safe to attach to any one person. There will be a staff person or volunteer to come shower their affections, and when they leave another will appear.

 If you feel you must volunteer your talents to orphan children, please do so in tangible ways. Do you have a skill set that is needed? Being able to love children is not a skill set! Can you build something? Are you a doctor who can treat their medical needs? Are you an occupational therapist who can train facility staff without having to handle the children yourself? Do you have something REAL to offer? If not, if all you have is time and money, please spend it more appropriately. Don't use "We're going to visit an orphanage and play with the orphans!" as a way to see other parts of the world. Take that money and find out the material needs of the facility, satisfying those needs without interfering with the lives of children who don't need to meet you.

Wednesday, July 02, 2014

Getting over the hump

Its Hump day today, and I have a big hump to get over. Yesterday was really rough with side effects. Although I was non-functional all day I couldn't really get any rest either. Finally around 5:00 pm I was able to get some sleep, and slept until 10:00 when I woke up with a 101 fever. Called the on-call Dr. (following Dr. orders just like I'm supposed to.) but by the time he called me back at midnight (gah!) my fever had broken. I supervised Angela getting ready for school then was able to sleep again until 9:00 this morning when my GI system kicked in big time, right on schedule. Now I'm sitting in "the chair" at the oncology clinic getting some fluids. I should perk back up for the holiday weekend.

Keeping the fact I only have one round left in the back of my mind. Trying to do this while being a mom at the same time sucks big time. To those who have gone so much longer, who have the rest of their lives on chemo, who do it every week or two weeks, I bow down to you.