Hair Update

I found this in my desktop photo album. I have no idea which doctor's paperwork I wrote this on. I do recall thinking I was hysterical at the time. I also remember the nurse not being amused. :)

Ugh.

I met with my PCP physician today to do a shoulder exam.
She thinks it's very likely a torn rotator cuff and wants me to see an orthopedic surgeon later this week.
I don't remember any one incident that caused the tear. Dr. Hollingsworth said it could have easily been caused by the way I was positioned during my surgery because I wasn't moved for such a long period and my arms were over my head.

Normally, an MRI would be ordered. Because I have tissue expanders that have magnets in them, I'm not able to have one now. I'm also not a candidate for a cortisone shot while I have expanders.
Dr. Hollingsworth will be calling my plastic surgeon tomorrow to find out more details on what tests will be okay while I still have expanders.

The last thing I want is surgery. I really hope they figure out something.
For now, pain meds and physical therapy may be our only options.

Tomorrow is almost my halfway point for radiation. I'm now on a steroid cream that is supposed to minimize the itching. So far, it's not working. Only 18 more treatments! If you can throw a few prayers my way that my boob doesn't split like a coconut, I would be more than thankful.

Thanks! :)

I'm borderline.

I went for radiation today and asked to see a doctor while I was there.
We are supposed to get terrible weather in the next couple days. I figured if I'm going to have to sit out a week, this would be the perfect one for me. Driving on snow and ice terrifies me.

My doctor wasn't in yet, so I saw one of her partners. He said that my skin was borderline.
He thought I should continue with treatment for now and he would have me see Dr. Sullivan tomorrow to make sure she agrees.

My blisters are gross. I have tiny ones all around the radiated area and the ones on my incision are green and oozy.
I have no idea what my skin is going to look like at the end of this.
Hopefully, my plastic surgeon will still be able to work his magic.

My back/neck/shoulder pain hasn't gotten any better despite pain killers and numerous trips to the chiropractor over the past two weeks. The chiro doesn't think adjustments are helping. :(
I am going to see my PCP tonight to possibly get a referral to a Orthopedic Surgeon.
I hope this is nothing major. I'm a little nervous.

I had the craziest conversation with a cashier at the grocery store.

Cashier: Can I see your ID?

Me: Sure

Cashier: Wow, you really cut your hair!

Me: Nope, I lost it to cancer.

Cashier: Oh, brain cancer?

Me: No, breast cancer

Cashier: *shakes head* I don't get it. How do you lose your hair from breast cancer?

Me: *explained how chemotherapy works*

Cashier: I know. I worry about breast cancer all the time because I lose hair all the time in the shower.
That really sucks. Everyone dies when they get breast cancer.

Me: Actually, more people live than die. Have a great day!


I'm still smiling about this conversation. This woman was in her late 20's.
While I'm extremely happy that she has never been touched by cancer and has no idea how cancer treatments work, it's unbelievable that ANYONE can be THAT clueless in this day and age.


Today at Goodwill, the cashier told me I looked like a young Jamie Lee Curtis.

Not a great day for small talk with the cashiers. :)

14 down!

I skipped out on checking with Dr. Sullivan Friday. I wanted to try some different things on my own before she put me on a mandatory break.

I'm just hoping I can somehow improve my skin before my appointment with her on Wednesday.
Here's what I look like today.

This is the part of my back that burns from exit radiation.

I'm currently using the Miaderm cream from the radiologists 4-5x per day and emu oil on the blisters. I have also started using another cream that feels similar to Aquaphor at night to keep my skin moist. I'm a soggy mess most of the day. I have no idea what I would do if I worked outside of my home.

Someone commented on my last post about taking a high dose of Curamin while she did radiation a few months back. She had great results. After researching it, I feel it's definitely worth trying. It has properties known for natural pain relief and skin inflammation.
I have added that into my daily supplements.
Thanks for that little tip, anonymous reader. :)

Sometimes...pink is bad.

I had a weekly check up with my radiation oncologist today to do a skin check.
Dr. Sullivan is a little concerned with how fast my skin is breaking down. It went from barely pink yesterday to bright red today.

There is also one spot along my incision line that looks like a possible infection is brewing.

She thinks it's very likely that I will have to take a break from radiation to allow my skin to heal.

I'm bummed. As you know, I'm not a huge fan of schedule changes.

I will be checked again on Friday after radiation to see what our game plan should be for the following week. I may be sitting that week out.

My skin doesn't hurt yet but itches at times.
I have noticed that any place I itch, bleeds a tiny bit.

The skin breakdown isn't unusual, it just doesn't usually happen this early into radiation.
I'm hoping my skin toughens up so I can get through this.
Just another bump in the road!

Nothing New!

Again, no news is great news.

Besides having a rib out from sleeping wrong, I'm in pretty good shape.
For the record, with these tissue expanders....there's no way to sleep right. Believe me, I try.

I'm still half side sleeping on my deflated side for now and making trips to the chiropractor often.
I have no idea how I'm going to sleep once they air me back up in March.

Today was my 10th radiation. Only 23 to go! I'm not minding the drive like I thought I would.
I can sing super loud and I have some of my best talks with God on the commute. It goes quickly.

I tried walk-running around the neighborhood yesterday. The weather was fantastic.
About one tenth into the first mile I came to the conclusion that there is no chance in hell I'm going to be able to run a 5k by July.

I should plan on bringing my dog, Cooper. At least then I would have an excuse to stop every 4 minutes. He's just as lazy and out of shape as I am.
I was thankful for the 5x he had to stop to poop on our short 1.5 mile jaunt.

We're pretty pathetic.

Happy Valentine's Day

Cancer won't hurt or help your marriage.

That statement is in a book Eric was given by a friend of ours. It is written for men whose wives have breast cancer.

It's true, for the most part. Cancer hasn't broken us up. Eric didn't run for the hills when I lost my hair or had my breasts removed.
It also didn't make us swoon like lovesick teenagers.

We are exactly as we were before...only better.

We are more tolerant and a better team. We truly enjoy our time together. We are living every day to the best of our ability.

I am so lucky that I have someone that pushes me to be the best person I can be and accepts me for who I am.

My best decision ever was to marry my best friend.

Happy Valentine's Day!

My 6 Month Diagnosis Anniversary is Today

I noticed a few days ago that I was coming up on the sixth month anniversary of the date I heard the news that would forever change our lives.

So much has changed. It feels so long ago. Thinking about that day, I can feel exactly what I felt at the second I got that dreaded phone call. Those few minutes will stay with me forever.

Thankfully, I feel stronger, braver and more confident than I EVER did pre-cancer.
Cancer sucks, no doubt, but I truly came out of this a better person.

Besides all of the appointments, I'm really happy with where we are in our lives. I love the people we have chosen to surround ourselves with.

Thanks to all of you for sticking with us during these crazy times. We know how easy it would have been for you to walk away.

On a sad note, I received an email a few days ago that I wanted to share with you.
I had mentioned in a previous post about a nice family I had met at one of my infusions. Her email tells our story.

Hello Angela,

My name is M and you may not remember me...

On Wednesday, December 28, 2011, I met you at the office of Minnesota Oncology in Woodbury. I was there with my mom, J, and we had just gotten the news that her cancer (she was a 5 year breast cancer survivor, but it had returned over the summer in her intestine) was not responding to the treatment she'd been receiving since July. At that time, our oncologist gave my mom a choice--to cease all treatment, or to begin chemotherapy.

Without missing a beat, my mom chose the chemotherapy, so we went into the infusion room with her--and that's where we chatted to you. (If you'll recall, you and I had actually joked around out in the waiting room for a few minutes when you "stole" my seat! It was obvious, from that moment, that you had a great attitude and wonderful sense of humor!) You told us all about your own experience with breast cancer, shared a lot of information and resources, and showed us pics of yourself at various stages of your treatment (we loved the pink wig!)...

I went home that day--being so glad that we'd met you. You were such a ray of sunshine and you gave us such a positive feeling of hope.

My mom was able to tolerate 2 chemo treatments...but sadly, about a week after the second one, she developed a very serious and life-threatening complication. She was hospitalized and stabilized, but we had to make the very difficult decision that there would be no further treatments...and that our goal would be to just make her as comfortable as possible--and let nature take its course...which it did. She was transferred to a nursing facility on January 16 where she could receive hospice care...and on Wednesday, January 25, she passed away peacefully.

I've always believed that, as we go through our days, we touch the lives of others--sometimes without ever realizing the impact we've had on them, so I just wanted to take this moment to share with you that you did, indeed, have a very strong and positive impact on us...

I wish you a very long, happy, healthy and cancer-free life...!

Take care,

M

My heart ached reading this. It's a grim reminder that, unfortunately, cancer can not always be stopped. I haven't stopped praying for M. I can't imagine the pain her family is feeling.

I also can't thank M enough for contacting me. We all need reminders that each of us have the ability to impact others with our actions and words.

Until we meet again, J. Rest in Peace.

Today is a GREAT day.

I like today.

Traffic was light this morning and it only took me 27 minutes to get from my house to the hospital's doors. Even better than that, I didn't need to use my GPS to get there or back. That's pretty big for me. I usually can't get out of my driveway without consulting my Garmin.

A cute couple, who I have talked to a few times at radiation, stopped to tell me they have been praying for me. It makes me so happy when people tell me that. Unsolicited prayers rock.:)
Cancer patients are the most pleasant people.

I made it all the way through radiation without having to redo any of my breaths. That's huge.
I have a problem holding my breath correctly without sucking in too much, too little, or getting the giggles.
I practice all the way to the hospital and I think I just get myself too worked up about it.

My breath holds have to be perfect and match my scans or the lasers won't line up properly.
It's quite the process trying to get the exact same amount of air in your lungs day after day.
I have the weekend off for rest days. I'm excited.

Here's a pic of my scan today. Notice the lines all over the walls and my body. There are red ones and green ones. They come from the machine and from the ceiling. I can see my reflection in the ceiling one. It's crazy to see the precise lasers making a grid on your body. While I lie there, I'm just in awe of this machine. Not that long ago, I wouldn't have had this option. I would have had to either skip radiation all together or risk heart problems. While I'm not a huge fan of going every day, I feel so lucky that I have all of these options to try to prolong my life. Man, God and Science are wonderful!

I'm wearing my bolus on the left side. I wear that for half of the treatment. It moderates the amount of rads I get at the skin's surface. My arms go over my head and fit in a foam thing that was formed to my body. I have to stay in the exact grooves every time. I even have to hold my watch on my left wrist with my right hand, because that's what I was doing when they mapped me.
If I have an itch, I have to yell for someone to come itch me. I can't move.at.all for 20 minutes. If I do, we have to start all over. It's so much pressure!

Only 29 sessions left.

Hmmmm....Am I feeling lucky?

I went back to Abbott again today for a meeting with Dr. Hutchison. Dr. Hutchison is the medical director for cancer rehabilitation and lymphedema at Sister Kenny Rehabilitation Institute and Virginia Piper Cancer Institute in Minneapolis.

She's one of the last specialists I will have to meet.
Since the beginning of this crazy ride, I have heard "We'll worry about that later" from a lot of specialists about a lot of things.
Lymphedema, being one of them.

Before cancer, I had no idea what it was. If you are clueless also, here's the definition:
Lymphedema refers to swelling that generally occurs in one of your arms or legs. Although lymphedema tends to affect just one arm or leg, sometimes both arms or both legs may be swollen.

Lymphedema is caused by a blockage in your lymphatic system, an important part of your immune and circulatory systems. The blockage prevents lymph fluid from draining well, and as the fluid builds up, the swelling continues. Lymphedema is most commonly caused by the removal of or damage to your lymph nodes as a part of cancer treatment.

There's no cure for lymphedema, but it can be controlled. Controlling lymphedema involves diligent care of your affected limb.

There's a high risk of lymphedema for anyone who has lymph nodes removed. The doctors have said there are around 30 lymph nodes under each of your arms. Their job is to catch infections and hold them there. If they don't do their jobs, infections can spread.

This is the same with cancer. Mine spread from my breast and into two of my lymph nodes. THANKFULLY, they did their jobs and held it there. If they hadn't, the cancer would have spread throughout my body.

The bad part of my lymph node involvement is that I had to have many removed during surgery.
I had 22 of approximately 30 removed. That's a huge amount. That leaves me wide open to infections on that arm.
Another icky part is the radiation that is recommended anytime your nodes are affected.
The worst part is, my odds of lymphedema are HUGE after having the removal and radiation.
Dr. Hutchinson told me today that I have a 60-70% chance of developing lymphedema.
Fabulous.

She did more arm measurements, checked for swelling and gave me the all clear for today.
Unfortunately, it could develop tomorrow or 20 years from now. There's no test to see if I will get it. There are only measures I can take to prevent it.

I basically should avoid anything that will restrict flow on my arm like tight watches, sleeves, etc.
No trips to the sauna, hot tub or steam room are in my future, as I am to avoid any extreme body temp changes.
Most importantly, I shouldn't injure my arm. I should avoid cuts and bruises on that side.
Um, I'll do my best.

Dr. Hutchison said I should just live my life and call if I see streaks, signs of infection or swelling on that arm.
Exercise and weight control are huge deterrents of the onset of lymphedema.
Noted.

My arm will be measured again after radiation ends in March to see if there is any changes in the size.

Here's a picture of late stage lymphedema, which is RARE now. http://www.lymphedema-clinic.com/

If caught early enough, a compression sleeve and/or glove can be worn to keep it manageable. Here's the one I have in mind. :)

I'm not going to stress. If I get it, I get it.
There are worst things, I suppose.

Parabens are NOT for me.

When I went to radiation yesterday, I gave back the cream they gave me the first day.
I explained that I would rather not use anything that is thought to CAUSE cancer to treat my finally cancer-free body.
The nurses nodded and we started the treatment.

After my treatment was done, a different nurse handed me a tube of Miaderm. She explained that their office is in the process of phasing out the old lotions and they would love if I would use this new paraben-free product that they will be switching to.
The best part is that Miaderm was developed by Radiation Oncologists.
I'm so excited that the office will be soon distributing paraben-free products to their patients!

So far, I just have a little pink area by my incision on my left breast. The skin is so thin there that I knew that would be the first place I would notice discoloration. It's not sore and doesn't feel like a sunburn yet.
I have been putting the Miaderm on about 4x per day and saturating the area with Coconut oil 3x per day.
I'm really staying hopeful that I can keep my skin hydrated so I won't have some of the bad skin effects from the radiation that I have heard about.

She REALLY liked my hair.

Those of you who are facebook friends with me may have saw my status update about the nice lady who walked by me at radiation yesterday morning and "liked my hair."

Did she REALLY like my hair? If so, why? There's hardly anything there.
Did I make her uncomfortable and those are the words that just spewed out?

Either way, I was hoping I would run into her today...and I did.
At radiation, you become a little family. We all go everyday at the same time. We chat before our treatments while drinking some hospital coffee. That lady, I found out today, ends her radiation right before I start in the morning.

She came up to me in the lobby today on her way out and asked how long it took for my hair to grow to this length and be full.
She was so sweet. She went on to mention that she was still bald from chemo and wouldn't dream of going without her wigs. She's counting the days until she can look like me.
I'm counting with her. It wasn't very long ago that my head was as smooth as a baby's bottom also.

It was just another reminder that I should be thankful for the sparse amount of hair I DO have.
I am. I don't wear wigs anymore, except for school events for Karsyn.
I can even spike it up into a little faux-hawk like my boys. It feels thicker and looks darker daily.
Last night was the first night in a LONG time that I REALLY towel dried my hair after my shower.
Normally, I do a little blot because the little hair I did have would come out if I rubbed it too hard. This time, not a single hair came out on my towel. :)

Here are some pics I took of my hair at my Herceptin infusion yesterday afternoon. Progress!

1st Day of Radiation

It went really well.
I still can't really lie on my back very well because of the pain from the tissue expanders, so today was a little tough.
We did more scans to make sure the radiation will be the most effective on possible bad cells without damaging the good cells.

This appointment was 80 minutes. Future radiation appointments will be 20 minutes.
The commute for the appointments will take 3x longer than the appointments themselves.

The radiology team gave me some cream to use if I have any reddening of the skin. Of course, it contains parabens, so I will be finding an alternative to use.

So far, nothing looks or feels different. I was told that I will notice fatigue before I notice any skin issues.
I'm staying positive that I won't have ANY of the side effects.
A girl can dream, right?
Only 31 more treatments left!

Another Day, Another Diagnosis

I saw a cardiologist today regarding the results from my heart testing that started way back in August '11.
At that time, it wasn't something they wanted me to worry about until after chemo was done.
I'm ready to tackle it now.

My diagnosis is Left Ventricular Non-Compaction Cardiomyopathy.
It's a rare condition that is considered a birth defect. Of 10,000 echocardiograms performed, it's found in approximately 4-25 people.

Here's a picture I found online that is much better than my doctor's chicken scratch diagram.

Notice on the right side of the picture how there are wavy pieces on the bottom?
That's what my wonky heart looks like.
In utero, everyone's heart looks like that. As babies develop, the heart should all become smooth. Mine didn't. I also have a big heart. (duh!)

Because of the wavy things, I have a lower ejection fraction, meaning my heart doesn't pump as efficiently as it should.

My ejection fraction is not that much lower than normal, so it's not a huge concern yet. Many times this goes undiagnosed and causes no problems for people.
For others, it causes blood clots, strokes and could even cause damage and/or death of the heart tissue.

Since I was lucky enough to find out about mine, I'm able to go on a daily beta blocker called Metoprolol and a low dose aspirin. He thinks I will probably be on these for the rest of my life.
I will also have check ups every 3 months.

He didn't tell me I needed a pacemaker, open heart surgery or a transplant anytime soon...so overall, today was a good day!

The cardiologist said I should continue life as normal and didn't see any reason why I shouldn't be able to run the Color Run 5k in July that Eric and I signed up for. Being fit is the best thing I can do for my body.

Time to start training!

Radiation starts tomorrow. I'm excited to start because then I'll be one treatment closer to the end. I'm hoping it goes fast.

The little things

You all know I have a slight addiction to Pinterest.com. I love seeing everyone's ideas and projects. I spend hours per week reading inspirational and funny quotes there.

I came across this gem a few days ago and it was perfect.
It's one of the few that I have read that summed up everything my heart was feeling.

We are SO lucky.