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It's been a long time since I've posted.  I've been busy...very busy and I just haven't had the time or energy to update my blog.  I actually started a post last month but then my computer crashed and I lost it.  It was titled "Pride Goeth Before the Fall".  It was about how my hair was coming back in and my eyelashes were so long and beautiful and I was so proud of them and then they all fell out.  Well, the lashes are back again, I'm happy to report.  It's weird that they fell out again so many months after finishing chemo.  Thank God my hair didn't fall out too!  It finally got long enough to need a cut.  Here's a picture of my friend Ember and me with my new hair taken this past weekend while she was visiting from Minnesota.

My new home is 14 miles away from my parents' house.  It feels much further away than just 14 miles.  For the year that I was going through treatment, my husband, children, and I were blessed to live with my parents.  I didn't take one second of that blessing for granted.  Now that we have moved into our home and I am on my own, I feel like a baby bird being pushed from it's nest, learning how to fly, building strength in it's wings, figuring out how to survive.  It's exhausting but I'm finally starting to feel like I'm getting the hang of it.  I've been so busy with just the every day stuff and on top of that unpacking, painting, surgery, infection, 3 weeks of IV antibiotics, mammogram and MRI on the remaining real boob, another 6 weeks of oral antibiotics, kids starting a new school...etc.  That infection really wiped me out.  I started antibiotics for the infection in June and it finally just cleared up last week.  My immune system is still compromised and my body just couldn't fight it off.  Four different types of antibiotic over two and a half months finally did the job.  I am finally feeling much better.

My little miracle boy turned 10 months old this past Sunday.  I can't believe it...in two months he will be a year old.  He is such an amazing, happy, brute of baby.  He weighed in at 29 lbs at his 9 month check up.  He has mastered the art of speed crawling and is moving on to standing by himself and pushing his little walker around the house.  I'm hoping he continues his trend of reaching milestones early and starts walking soon because he's one heavy little guy and my back is really starting to feel it.  Here he is with my dad this past Saturday.

I really need to start updating my blog more frequently.  There are so many things on my mind that I would like to share but when they start to stack up I don't know where to begin.  There's so much going on in my head with all this cancer survival stuff.  I really don't like the term survivor... It just isn't my thing.  It's a label and I'm not into labels.  Cancer is by far not the hardest thing in my life that I have gone through and I have no intentions of letting it define me.  Maybe that's one of the reasons I so greatly dislike the whole pink campaign.  I am just a person, a creation of God.  A person in awe of God's creation and blessings in my life.  And here is a perfect example of that.  I took this picture of my back yard and a doe and her fawn.  How blessed am I?

 

Deformed

I just finished crying...big ugly tears kind of crying. And yes, it's because I'm feeling sorry for myself. I had my surgery this morning to remove my expander and the necrotic skin. It was quick and easy. I arrived at the surgery center at 6 am where they made me wait in the waiting room for an hour before taking me back to the pre-op area. I love how they do that...make you get up earlier than you needed to so you can wait around. So I went in at 7 am, surgery started at 8, at 9:15 I was in recovery texting my sister telling her to come pick me up, and by 10 am I was home at my parent's house. The kids and I had spent the night at my parents house so my dad could watch the kids while my mom took me to the hospital.  John is in Alaska for work. He asked if he should cancel his trip because of my surgery but my mom and my sister were willing to take care of me and the kids so he was able to still go. Anyhow, I spent the day at my parents house after surgery. I'm pretty doped up on pain killers so the pain isn't too bad. I've had quite a bit of nausea from the anesthesia and had to run to the bathroom a couple of times. I slept on and off throughout the day and then after dinner my parents drove us home. They got the kids to bed for me. After they went home I went to my room to get ready for bed. I took off the bandages and looked at the surgery site where I expected to see a flat boobless chest. That's not what I saw. What I did see horrified me. I'm actually starting to tear up again just thinking about the experience. I'm deformed. Not just mastectomy deformed. I don't even know how to describe the hideous vision of what was formerly known as my right breast. It's this big mess of tight skin and excess skin with a huge incision which lies in a sunken in valley where the expander used to be. I saw this mess for the first time about an hour ago and I cried tears of self pity. Lots of big ugly tears with several sobs thrown in as well. 

I've had two episodes of self pity tears today. The first time happened this morning after I got all gowned up for my surgery. I really didn't like the nurse who was doing all my pre-op preparation. She was stiff and cold. She had no compassion. I felt so strong going into this surgery. I didn't feel too disappointed about losing my foob (fake boob). I wasn't afraid of the surgery or the recovery. I was fine. Then this nurse was cold toward me. She didn't do anything wrong. She just wasn't anything like all of the loving, compassionate, tender hearted nurses that I've had before. Then again, all those previous nurses knew about my diagnosis during pregnancy. This nurse today, all she knew is that I was there for surgery with a plastic surgeon. All of a sudden I felt defensive with this nurse. I wanted to say to her... Do you realize that I don't want to be here?  Do you realize that something is being taken from me today that I don't want to have taken away again?  Do you realize that most women my age having plastic surgery are getting a nose job or a tummy tuck and all I want is to have a second breast but I don't get to because my cancer treatment caused an infection. I wanted to tell her all these things but I was just saying them to myself and causing my own heart ache. Once you start down that road...that road of misery and self pity, it's hard to stop.  Yes, all those things are true. But what's the point of dwelling on them or even thinking about them at all for that matter?  It's so much easier to just ignore those feelings. It's healthier for me to ignore those feelings...because I'm doing fine. Actually... I'm great. I choose to be good...even with only one boob and a deformed right side. I might cry every time I look in the mirror...but cover that crap up and I can forget it's even there and then I'll be fine. I really do believe that we choose how we live our lives. I choose to live well. Oh...that reminds me of a hymn. I'm sure that hymn would describe exactly what I'm feeling.  I can't think of the name. All I can think of is that it says something about being well in my soul. Okay figuring out what hymn that is will be a job for tomorrow because I am too tired tonight. 

Paint Me a Picasso

Today I'm feeling pretty dumb. I started radiation in March. My plastic surgeon didn't get to finish filling my expander before radiation began which meant that my fake boob was quite a bit smaller than my real one.  Radiation lasted for 7 weeks and when I finished my expanded breast was the same size as my real breast. I didn't even realize it until last night in the ER. The ER doc poked a needle into the infected area of my breast to get some discharge to swab. Well, that tiny hole became a drain for an unbelievable amount of serosanguineous fluid.  (Serosanguineous fluid is a yellowish/pinkish colored fluid). Every hour the nurse had to redress the wound because the gauze pads were drenched in the nasty stuff. By the time I was discharged  it was still draining. The nurse sent me home with a bag full of supplies and by the time I got home I had to redress the wound again. I'm not kidding you...I think I lost at least a pound from all the fluid that came out of me and my breasts are back to being lopsided. 

The most amazing part to me is that I didn't realize how much pain I had been in until all that pressure was relieved. The pain started with 2 weeks left in radiation. I was having horrible pain. It had become painful to even wear clothing that put pressure anywhere near my breast.  I'm talking even the smallest amount of pressure...even the pressure from a camisole tank top was uncomfortable. Another interesting fact is that the headaches I was having started at the same time as the pain in my breast. 

This morning I took the kids to VBS, called my plastic surgeon and informed him of the new situation. I went in to see him immediately. He took a look at my infected foob (fake boob) and informed me that the skin is dead and will have to be surgically removed. The expander will have to be removed as well unless by some miracle the infection has not spread to encompass the expander. Chances are slim to none but that's what I'm hoping for. Surgery needs to happen very soon. He also referred me to an infectious disease doctor. I love my plastic surgeon by the way. He is so quirky. Anyhow, I went and saw the infectious disease doctor and he thinks the infection is staph. He prescribed 14 days of IV antibiotics. He called in the prescription to Walgreens Infusion and they delivered the IV supplies and the antibiotic to my home and then Walgreens sent out their best nurse to set up my IV and teach me how to administer my own antibiotics. That amazing nurse just happens to be my very own amazing sister, nurse Cyndi. Pretty awesome right?  My sister really is amazing. Besides being a Peds nurse at Cottage Hospital in Santa Barbara, she also works for Walgreens Infusion.  Oh yeah...and she also has her own mobile phlebotomy business too. So she always draws all my labs for me and saves me from sitting in another waiting room. I know...you don't have to tell me...I'm blessed to have her.  On top of her 3 jobs she also has a husband and 3 kids. She also somehow managed to go to almost all of my chemo appointments with me too. I wish I could send her a cruise. 

My plastic surgeon called me after he had spoken with the infectious disease doc and they have me on the surgery schedule for next Wednesday. Cut out the dead skin and remove the expander. I will once again resemble a Picasso...one boob. That guy would have loved to paint my portrait. I'm sure of it. Actually, I think this one might be of me. 

a CT and an IV

Life is busy...a wonderfully normal kind of busy. It's been great. It's been exhausting. There is so much to update. I turned 34 years old on June 1st. That was also the same day I moved into my new home. I've been running around like a mad woman for the past two weeks doing field trips and class parties with the kids, doctor appointments, unpacking, and just normal mom stuff. It's unbelievable how much less energy I have these days. By mid afternoon, I feel like I need lots and lots of ibuprofen and caffeine or just a really early bedtime. 

On June 6th I was scheduled to have an MRI of my brain to find out if the headaches I had been having were caused by cancer. I went to my appointment and getting ready to start the procedure the tech says, "did you say you have a breast expander?  Does it have metal in it?"  Well, the answers were yes and yes. No MRI for me...duh...I don't know why I didn't think of this sooner. You can't put metal in a big magnet. That could have turned out really bad. I immediately drove over to my oncologist's office and told him and he got me scheduled for a STAT CT for the following day. Those days are really hard for me.  The days when it feels like things are just all wrong.  The days that are filled with frustration and fear of what could be wrong. It is also those days that are so hard for me when I get to experience blessings. That night while I was making dinner, my doorbell rang. I opened the door to a delivery of an edible arrangement from two of the sweetest people I know. These two ladies have blessed me so much throughout this past year and so many times it was on days when I needed a little pick me up and to feel loved.  Well, the following day I did have my CT scan and received the results that same day. My brain is fine. And you know what?  It's amazing how much better my headaches are now that I'm not spending so much time stressing about them. I thought they were just stress headaches but now I know how much the stress and fear was actually exacerbating them. 

I am currently a patient in the ER at Santa Paula Hospital. About two weeks ago I started experiencing some issues with the skin on my fake boob. I went in to see my plastic surgeon and he prescribed an antibiotic and some skin cream. Well the skin has gotten a lot worse. Today I showed it to my sister nurse Cyndi, and she wanted me to go to the ER. I was surprised because it has to be pretty bad for her to suggest an ER. So here I sit with an IV dripping away.  I've been here for 4 hours already getting pumped full of the strongest antibiotic they've got. I have a couple more hours to go because the IV can only drip so fast and they have given me an extremely high dose. We're not sure what type of infection it is but these bags full of IV meds will kill it, I'm sure. Unfortunately it looks like I will most likely have to have the expander removed. Another surgery...just what I don't need.  Oh well. 

Here I am in the ER with my sister, Cyndi. 

Here's my new home. 

Don't Sleep and Drive

Parents...before you allow your children to get their driver's license please explain to them the difference between health insurance and auto insurance.  You will be doing your entire community a huge favor.

Yesterday morning at 4:45 am I was woken up by the sound of a car accident.  I jumped out of bed, looked out the window and saw a man get out of his car and walk back down the street.  I went to another window overlooking the front of the house.  I watched the man walk up to my minivan, look at it, and then walk back to his car.  I threw on a sweat shirt and slippers, grabbed my phone, and headed for the front door.  I got out front and the neighbors across the street were already out there and had called the police.  I went back in to wake up my sleeping husband.  (I'm not sure why I didn't think to do this before I headed outside)  Apparently the kid had fallen asleep at the wheel and side swiped my car.  He tried to take off but his car was no longer drive-able.  When the cops showed up and asked him for his insurance information, he handed them a copy of his Blue Cross Blue Shield card.  Now...I've thought this through quite a bit.  Could he have been trying to be funny?  Maybe he thought giving the officer his health insurance card would actually trick the officer into taking that information?  He couldn't possibly have thought the officer actually wanted his health insurance information, right?  He couldn't actually be that stupid?  Well, the kid's future isn't looking too bright.  He's already had a DUI, been caught driving on a suspended license three times, had a warrant out for his arrest, and totaled my car without having any insurance to pay for it.  The biggest bummer of all... we have only liability coverage.  We will have to pay out of pocket to fix the car or buy a new one.  None of those are a good option when we're about to put our life's savings down on a house and we need to buy appliances and furniture.  Thank God for my husband who can fix anything.  He will spend the next several days locating the parts needed to get the car drive-able.  He will have to replace the rear axle.  We'll have to live with the body damage.  It looks ugly but all we really need is a car that's safe and fits the entire family.  John better get that minivan fixed before we both need to be somewhere at the same time.

About a month ago I started having headaches.  I mentioned the headaches to my oncologist.  He said he thought they were probably stress related and he wanted me to try to reduce my stress and see if it helped the headaches.  Well, the headaches haven't gone away.  When I get them, I freak myself out.  I focus on what I'm experiencing and I start thinking about metastasis to the brain.  I try to convince myself that they are just tension headaches from stress.  I mean... I do have a lot going on right now and the headaches did get a whole lot worse yesterday after my car was crashed into and I started to think about the financial ramifications of not having uninsured motorist coverage.  I told my oncologist the headaches have not gotten any better and now the brain MRI is scheduled.  June 6.

We will get the keys to our house on May 31, the day before my 34th birthday.  We will need to baby proof first thing.  Zeke is a mischievous little monkey.  He is crawling now and I'm certain he is going to be a climber before I know it.  He already wants to pull himself up on everything.  I yelled at him for the first time the other day.  He had crawled over to the fireplace and was trying to pull himself up on the bricks.  I was across the room and yelled, "NOOOOOOOOO!"  Poor little guy.  I think I traumatized him.

I am looking forward to having a big party in our new home.  I want to invite everyone who has supported me through this past year.  I am so appreciative of all the support and love you have all provided.  Expect to receive and invitation by email, by facebook, or by mouth.  I can guarantee that I will not be sending out formal invites by mail.

Big Headed Baby

This past week has been very full.  Zeek hit some big mile stones this past week.  He learned how to clap and he is just the cutest little clapping boy.  Yesterday he learned how to push himself up off the floor into a sitting position.  Today he learned how to pull himself up on the coffee table to a standing position.  He will be 7 months old in one week and he is getting way too big way too quickly.  Today he also started saying, "Dada".  

Zeek had his MRI on Thursday.  They had the results ready that same night.  The pediatrician said, "His brain is perfect.  He just has a big head, so expect great things from him in college."  The best news ever!  

Here's a video of the little guy from last week. 

Off the Charts

Today I received a call from the doctor and the first words out of his mouth were, "I received the results of the head ultrasound. We didn't find a tumor."  Despite the fact that those words are great to hear, they are not words I was expecting to hear.  I hadn't even considered cancer to be a possibility.

Zeek had his 6 month check up this past Monday.  He is reaching all of his mile stones and even advanced in some areas.  He is strong... so strong that the doctor couldn't complete his exam of Zeek's hips because of his leg strength.  Zeek is off the charts for his height, weight, and head circumference.  His head is growing at an accelerated rate and the doctor wanted to do an ultrasound to make sure everything is okay.  He wasn't too concerned about it because everyone in the family has large heads.  He also wanted to have the ultrasound done now while it's still possible.  They can only do head ultrasounds on infants while they still have their soft spot on the top of their head.  If they wait until the soft spot has closed an MRI has to be done and the baby has to be sedated.  So the 6 month check up consisted of impressive remarks about his development and his strength, 4 shots, and an order for a head ultrasound.  I got home and immediately printed out the CDC's growth charts and plotted out Zeek's stats from his 2, 4, and 6 month check ups.  Here they are:

Zeek's height and weight stats.

Zeek's head circumference at the top.

 So he's off the charts for everything.  He's a big ol' boy.  That's to be expected when your mom is 5'11" and your dad is 6'8".  I really wasn't worried about the ultrasound at all.  I took him in on Tuesday for the ultrasound.  They said it would take a couple days for the doctor to get the report.  This morning I called because I hadn't heard anything yet.  The doctor returned my call and now we're back to how the conversation began.  He said, "I received the results of the head ultrasound. We didn't find a tumor but there was mild dilation of the lateral ventricles."  And that is the point in the conversation where I scrambled to ask the right questions in order to have enough information so that I don't go searching for information on the internet that leaves me scared to death.  The problem is... I'm ignorant on this subject.  So that leaves me to ask questions which will have answers that I do not understand as well.  The rest of the conversation went something like this:
"What would cause that?"
"It could just be nothing or it could be hydrocephalus."
"If it is hydrocephalus, what would cause that and how would you treat it."
"There are many things that can cause hydrocephalus.  We will need to do an MRI.  He will need to be sedated.  Hydrocephalus is a build up of fluid in the brain."
There was more to this conversation.  This is really all that I remember other than the mention of a shunt being used to drain the fluid from his brain.  This conversation took place while I'm sitting at the table feeding this beautiful, ravenous little sumo baby a bowl full of green beans and rice cereal.  I'm sitting there looking at him unable to really process what is going on.  He is perfect.  He is healthy.  He had a bazillion ultrasounds during pregnancy that showed that his brain was perfect.  He went through chemo in utero and he's perfect... He went through chemo... CRAP!  What if it's my fault... Okay that's stupid.  The doctor's said that chemo cannot cause birth defects... what if it caused something else...what if... and that's when the tears started flowing.

Next week I will get a call to let me know when the MRI is scheduled.  They have to consult with the Pediatric Anesthesiologist first to make sure he's available.  I assume it will be scheduled for later in the week which will be good because I can't go if it's during my radiation time.  I'll be finished with radiation on Tuesday.  Woo-stinkin-hoo.  Yes, that was said with all the sarcasm I can muster right now.  I've been in treatment for cancer for over a year now.  April 26th was my Cancerversary or whatever they call it.  I thought I would be excited to be finished with treatment but I just feel like... big freakin' deal.  Now I can get back to living life without the excuse of a crappy immune system or burned skin to keep me from doing the things that need to be done.

Burns... radiation burns.  I was doing well.  My skin was holding up great until it stopped holding up well and I was no longer doing great.  It happened so quickly.  My armpit and my ribs hurt in a way that is hard to explain.  I can explain the part about the skin.  That's easy.  I will just say that there is an open wound and they have given me cream that is used on 3rd degree burn patients.  The tissue hurts all the way to the bone.  It is bad enough pain to keep me from sleeping at night which is why I have been prescribed pain meds.

This is my armpit when the skin first started to open up.  It actually has gotten a lot worse since this picture was taken.

I have actually been feeling pretty good except for the past couple weeks when the pain from the burns started to get bad.  I need to write my next post when I haven't had such a hard day.  I'm tired of sounding defeated because I don't feel defeated.  I take that back.  Today I feel defeated.  Today was the 4th day of my husband being out of town on business.  Today was my 33rd radiation treatment.  Today I was given news that my precious baby boy needs an MRI and there is the possibility of something being wrong.  Today I am emotionally exhausted.  It has been a long year.

Zeek on his 6 month birthday.  Ephraim dressed him up as a pirate.

Zeek bathing in a too-small-sink.