Blogging about life and raising our five 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 23, 2014

Teaching

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 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. 

Monday, June 30, 2014

Round 3: Now I know

Normally I get my chemo on a Thursday then 24 hours later get my Neulasta shot. That injection is what keeps my white cell count up so I can fight infections.

But last week I had a little glitch with my gallbladder, causing chemo to be postponed until Friday. That meant I had to wait until today (Monday) for my Neulasta shot. I also got rehydrated.

Interestingly I didn't sleep for the first 4 day after chemo. Instead I've had a hard time sleeping much at all. A couple hours here and there. But today I got that Neulasta shot, and now I know what makes me sick. Its that shot! The bone pain started within 2 hours of the shot (I knew the bone pain was from the shot) and tonight I'm exhausted and running a temp.

I only have one round left. I'd really like to do that round without the shot. Its not like I have another 12 rounds left of counts going up and down. Its my last one. I wasn't feeling too bad until that shot today. I'll talk to my doctor about it when I see her on Thursday.

Thats the update for now. I'm headed to bed and will probably not be online much over the next couple of days. Trying to let my body recover so I can participate in our Nation's holiday this weekend. 

Sunday, June 29, 2014

When the kids are away

When the kids are away, Dudley finds someone else to take care of. 






Friday, June 27, 2014

The Man in the Mirror

When I found out I was going to be loosing my hair I shaved it off. I have control issues, you know. I ordered some fun hats and one ministry sent me a beautiful scarf, which I love. As my hair has fallen out I've discovered I have a terrible memory (gasp) and would often realize I had left the house without bringing any head cover with me.

I also discovered I am SO HOT!!!

No, no. Not "Hot" like I should be in magazines (just the thought makes me laugh) but HOT as in I am constantly sweating. I wouldn't call it  hot flashes, but more like living in the dessert with the sun beating down on me kind of hot. My head is constantly sweating and I just can't stand wearing anything on my head anymore, so I go without.

Yes, that's right! I just go out in the world bald as a cue ball, not really caring what other people think. At least most of the time.

A couple days ago I was in Walmart to get something for the boys. We were in the isle with the water toys when one of the associates asked, "Are you finding everything you need sir?"

Ummmmm

I didn't know how to respond so I didn't respond at all.

A few minutes later in the check out line the clerk asked, "And how are you today sir?"

Really???

"My day is going GREAT! But I'm a ma'am. Still, its a beautiful day and life is grand!"

He was so apologetic. He felt terrible.

"Don't worry about it. Happens all the time!" I smiled.

Because, in fact, it had happened in my own home!

The other night I was in the bathroom helping Angela with something. I turned to get something out of the linen closet and nearly jumped a bit when I noticed a man standing behind me. Oh! It was my own reflection in the mirror.

Good grief!

Happy Thursday from the chemo chair!

Saturday, June 21, 2014

Kinder Eggs

When I was in Serbia to bring Audrey home I intended to do a blog post about Kinder Eggs, which never happened so here it is!

Kinder Eggs can be found in much of Europe. The toys inside are considered collector items by a lot of kids. Kinder eggs are banned in the US because they inside parts are considered a choking hazard.

The pictures are pretty self explanatory but what you can't get from them is the deliciousness of the chocolate!  My thumb is in the pictures so you can get an idea of size.













Park Pics

We have this little park a few blocks away (just out of walking range for a couple of our people). We love to take the kids up there!

Asher is usually hanging on or climbing up something. 
 He has no fear of anything.


Mooooom!!! Take my picture up here!

Axel spent a lot of time trying
to teach Abel how to pump his legs.
Abel is SO CLOSE to doing it himself.





The look when I tell him, "Sorry buddy,
 you have to do it yourself."


Mooommm! Take a picture of me here!



Not really caring for the weird toy on springs.

Angela declared this "The jail". 

Then hollered for Asher to come get her out. 
Asher was game! 



Ummm..what if I want to leave her in there?


Audrey loves the toddler swings.

Unfortunately she is not really a fan of the climbing part.



Friday, June 20, 2014

Father's Day

Please excuse my lack of posts lately. It takes me 8-10 days to recover from chemo and then a few more days before my brain is really able to formulate thoughts and by then there is just too much going on for me to post.

Anyway, on Father's Day we just hung out here at home. I was just starting to feel well again but didn't have much energy to burn yet. We took the kids to a nice little park just up the street where they had a good time playing.

Every day I'm thankful for this man God brought into my life. I could not have asked for a better dad for our kids!
Whatcha doing Daddy?

Oh! Pulling those weeds? 

You look like you need someone on your lap to help.

I love when you whisper on my ear.

Thank you for being my daddy!


Friday, June 06, 2014

Happy 18th Birthday!

Happy 18th birthday to The Queen today! 

She arrived a bit earlier than expected at 4 lb 4 oz. and was immediately airlifted to the children's hospital in the middle of tornado weather. That's so typical of Angela! Stir things up a bit just to keep things exciting.

She finally came home from the hospital at 6 weeks old weighing 4 lbs even! I went out and bought a doll that came with 3 dresses so I had some clothes to put her in. LOL Now today, 18 years later, Angela continues to amaze us with her tenacity, her ability to love unconditionally, her sensitive and nurturing heart. When she is done with school she wants to work at the children's hospital in the pre-op area, helping kids not be afraid before surgeries. That's my girl!!!

Happy birthday Angela!


If you wouldn't mind saying a quick prayer for Angela. Her asthma is really bad right now and we're working hard to keep her out of the ER. She's complaining that her chest hurts so I give her two - 3 hours for the steroids to kick in and if that doesn't improve then we go. 

Wednesday, June 04, 2014

How to kick chemo's ass

Would you like to know how to kick chemo's ass?

Then you have come to the wrong blog because I don't really know! I do know that chemo does a pretty good job of kicking MY ass, but I rally around day 11. ;-)

In my last cancer related post I mentioned that things were not so good. The first 10 days after treatment I lost 11 lbs, had to get IV fluids three time and had diarrhea every 30-60 minutes - round the clock - for 12 days. But I made it through and on day 12 I was starting to feel close to myself again.

I had been told that on day 14  magic switch goes off and I would start loosing my hair. They were right, I just assumed it would be the hair on my head first! Around day 12 or so I started sneezing nasal hairs. That was pleasant! LOL On day 14, sure enough, I started loosing my hair, except that it was pubic hair, followed a couple days later by my armpit hair. The hair on my head started falling out a tiny bit on day 16 and by day 17 I had patchy hair loss. On day 18 I shaved it down really short. (because it wasn't short enough before. LOL)

This picture was taken yesterday, day 19. 
I have large patches gone on the side of my head. Of course, 
its the gray hairs that are still firmly attached! 
The back of my head has many dime-sized patches gone.
(Note to self: selfies from the side are tricky!! 
And I have no idea what the blue mark is on my 
mouth, its not on the original picture. Weird! ) 

Yesterday the hair on ONE of my legs was gone. Today its gone on both legs and the hair on my arms is starting to fall off. Its just all really odd!!! You touch it and it just falls off. My eye lashes have thinned out and I expect them to be gone soon. So far my eye brows are still intact. 

On Thursday (June 5th) I'll be having my second round of chemo. I met with my oncologist yesterday to get my counts and go over some things. The side effects I had last time were pretty severe, the most concerning being the GI related stuff and my doctor is worried about me developing colitis. 

I need to clarify since there is some misunderstanding. I am not AT ALL nauseous. I get three different anti-nausea meds via IV with my chemo, plus oral steroids for the next two days. My GI problems are all diarrhea. The two anti-diarrheals I took last time didn't really do anything for me. Well, maybe they decreased the episodes to 10 times a day instead of 20+. I think what helped more was three consecutive days of IV fluids which allowed my body to recover a bit. 

Because the two drugs I'm getting have a cumulative effect my oncologist believes my side effects could be worse with this second round so we've made some changes. This time I'm going to be starting oral steroids the day before treatment, (which is tomorrow)  then I'll have the IV steroids with chemo, then orals again for the next two days. I'll also start the anti-diarrheal meds the day before. On Friday when I have my neulasta shot I'll get a bag of IV fluids and then again on Monday. 

As for the bone pain, that is caused by the Neulasta shot that I get on Friday. There isn't really much we can do about it, but if it gets too bad I won't wait so long and I will go into the ER for some IV pain meds. At least I know that only lasts 3 or 4 days and then its done! 

I'm pretty much dreading this round, but you can bet I'll be ticking the days off on the calendar knowing by day 10 or 11 I'll be feeling much better and will get 10 really good days. And after this round I'l be half done!! After that? 35 radiation treatments! Woot woot!

Dog Day

Memorial weekend I put out a call for help on Facebook. My dogs were a MESS and desperately in need of grooming. Unfortunately I just didn't have the energy to get them all done myself like I usually do and didn't really have the money to spend on professional grooming. But, my dog trainer friends came through and we had a little grooming party here. A HUGE thank you to Abby, Deb, Christie and Lori for all your help!!!


 My little man Roman feels SO much better! 


Zurri thinks the grooming table is a good napping spot. 



Dudley had a bit of a break when my 8 hp dryer blew the circuit. 


Back to the table Dudley! 


Looking good guys!!! Thanks again to my good friends for helping out!