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.

For the Love of Hair

It's been a while since I've blogged.  I think about blogging frequently but then I just don't do it.  Now I'm at the point where I have so many thoughts that I'd like to share that I have no idea where to begin.  I guess I'll begin with what weighs most heavily on my heart.

The cancer center is not a place you want to run into your friends.  Thursday on my way out of radiation I ran into one of my friends.  She has been battling Lymphoma for around 10 years.  Thursday when I ran into her, she had just received really crappy news.  The cancer has returned with a vengeance.

Last summer while I was still pregnant and going through chemotherapy, I came into contact with another woman who was going through chemo during her pregnancy too.  She was the first pregnant cancer patient I connected with.  We went through our pregnancies and treatment together.  She delivered her baby boy in January and had clear scans in January as well.  Two weeks ago she received the news that the cancer is back and has metastasized to her bones.

My heart is broken for my two friends.  I am so angry for them.  They have both already been through enough physical suffering.  They shouldn't have to do this again...to go through the physical trauma of chemo or the emotional trauma that comes along with cancer and treatment. Then there's part of me that worries for myself.  Every little pain... is it cancer?  I don't dwell on those thoughts too much but they are there... nagging at me in the back of my mind.

Radiation is going pretty well.  I finished number 23 on Friday.  I thought I was going to have 30 radiation treatments but it turns out I was wrong.  I'm actually going to have 35-37.  So far I have a large red square on my back and on my chest.  I have a red strip on my neck as well.  They are radiating the entire chest wall on my right side, the lymph nodes in my axilla (arm pit), and the lymph nodes in my neck.  The burns hurt but it's not as bad as I expected it to be.  Then again, we'll see what I'm saying in another week as the symptoms continue to worsen.

Hair is beautiful.  I love hair.  The hair on my head, eyebrows, eyelashes, and even nose hair... I love it all!  You never know how great nose hairs are until you don't have any.  Those are handy little suckers!  I am happy to say that I now have hair on my head, short stubby eyelashes and eyebrows that are growing in thicker than ever.  I wish the hair on my head was coming in as thick as my eyebrows are.  I've never been one to appreciate bushy eyebrows but you won't hear any complaining from me.  Bushy eyebrows can be tamed.

My last rounds of chemo left me with neuropathy in my fingers and I started to get bruises under my fingernails.  Well, the bruising caused about 2/3 of my fingernail to detach from the skin.  It's hideous to look at so I keep my nails painted these days.  The other day I removed the polish and took a picture.  Here are a couple of pictures of the crappy side effects of chemo.

My fingernails at the end of chemo when the bruising had just begun.

Fingernails discolored from chemo and detached from the skin (2 1/2 months after chemo ended)

Brows and lashes almost completely gone.  A few days later the rest of the eyebrow hair fell out.

Zeek has been sick for the past week.  Last weekend he started wheezing so Monday I took him to the doctor.  He had to have a breathing treatment.  It was pretty sad but he did well.  The doctor referred to him as a "happy wheezer".  It's true.  Even when he's sick he is still full of smiles.  He is such a little blessing.

Zeek getting his breathing treatment.

Thank you for your prayers.  Only a couple weeks left of treatment and then I can get back to growing hair and getting sunburns the good old fashioned way.

Venting

There's something about being physically vulnerable that makes me lose it emotionally.  Tonight I walked out of the gym and the tears started flowing before I even made it to my car.  I am exhausted physically and at the point where I'm so sick of having an excuse as to why I can't do things or why I can't do things as well as I want to do them.

I was sitting in the waiting room yesterday waiting for my turn to get my body radiated.  This lady who I'm sitting with starts to tell me about how radiation is the highlight of her day.  She said that she loves to be handled by those two hotties (referring to the radiation techs).  So I go into the radiation room, I lay down on the table and think to myself, "who in their right mind enjoys this crap?"  Okay... so this lady did disclose that she hasn't been touched by a man in over 15 years, so maybe she is a little out of her mind... I mean I did just meet her for the first time and she's sharing all this way too personal information.  I just chuckled and nodded my head and then bolted out of the waiting room as soon as I got a chance.

Radiation is extremely uncomfortable for me.  I am a modest person by nature and laying there on a table with my one real breast exposed and my one fake mound that protrudes from my body in a freakishly bizarre way is not my idea of a good time.  The techs have to lay a bolus over my fake mound.  A bolus is a material which has properties that are similar to tissue and when laid over the skin it increases the dose of radiation administered to the skin.  So they lay this thing over my fake mound and then have to smooth it out to make sure there are no air bubbles.  It is so far from enjoyable.  I'm starting to get used to it though.  Today was number 7.  Only 23 more to go.

Anyhow, I was explaining earlier about walking out of the gym and immediately crying.  Today I am angry.  Today is the 28th day of March.  I have been in Ventura for 11 months.  I have been a cancer patient for 11 months and I am still not finished with my treatment.  I hate this.  Today I am angry that I have to deal with this.  I am sick and tired of looking like crap.  My hair is still barely coming in.  I now have to draw on eyebrows for the first time in my life.  My body is weak and can't do what I want it to.  I am angry.  I hate what cancer has done to me.  I hate this fear that every little ache or pain might be cancer.  I hate that when I meet people and they see cancer written all over me through my missing eyebrows and the new hair coming in on my head that all they want to talk about is everyone they know who has or had cancer.  I hate that cancer is what people see when they see me.  I AM NOT CANCER.  I am angry because I can yell about not wanting cancer to consume my life but it has.  That's what I do... every day... treat the cancer.  I don't really talk about it much until I get on here and find my cathartic release through my blog.  People ask how I am and my answer is still fine like life is normal.

My husband started coaching football at the local junior college.  It's not even football season and he's at practice 4 days a week in the afternoon after he's finished working.  We're buying a house.  We are moving out of my parents house into a house of our own and we have no furniture.  We have beds and last week I bought a dining table and a dresser from an estate sale.  We have no appliances.  My kids will be switching to a new school...their third school in the past year.  I still have 5 weeks of radiation left.  Today I am angry.  I left the gym, went home, told my husband to watch the kids, grabbed my computer, drove down to the beach to watch the sunset, turned on Tchaikovsky, and now I'm venting.  I'm overwhelmed.  I'm exhausted.  Today I'm tired of being me.

Radiation Begins

I've been learning how to go with the flow.  There isn't much in my life that I have control over but if I could control one thing right now it would be my hair growth.  My eyebrows and lashes thinned during chemo but they hadn't fallen out.  My leg and arm pit hair had all fallen out and of course the hair on my head.  Well, the head, leg, and arm pit hair have started growing back and the eyebrows and lashes have started to completely fall out.  I am so ready to not look sick anymore.  It's easy to hide a bald head but impossible to hide missing brows and lashes.

I was supposed to start radiation last week but it didn't go according to plan.  On the first day of radiation, it takes considerably longer because they have to line everything up and take additional xrays and make sure everything is mapped out perfectly so that they don't end up radiating organs. Well, I did that at my appointment last Wednesday and they decided that I needed another CT scan.  I already had a CT scan on the 1st of March and then I had two more appointments with my plastic surgeon where he filled my expander trying to get the skin stretched out before radiation.  I made sure to get the radiation oncologist's approval before I had the plastic surgeon expand more.  My plastic surgeon even called to confirm that it was okay for him to continue expanding.  Well, apparently it wasn't okay after all because it required me to start all over again and get a second CT scan and delayed my radiation start date by a week.  

The first radiation appointment was horrible.  They had me undress from the waist up and put on a gown.  They took me into the room where I will be receiving my radiation treatments and had me lay down on this cold hard table.  I then had to take my arms out of the gown and reach up above my head and hold on to two handle bars.  I then turn my head to my left, they pull down my gown to expose my chest and they tell me to hold still.  I'm laying there trying to hold still and it was taking forever.  The room is cold and I my arms are starting to go numb.  I laid there for almost an hour trying to keep my body from shivering.  After I was finally finished, I asked them about the temperature in the room because I'm worried about being able to hold still when I'm freezing.  The radiation tech said that they have to keep that room cold because the machine gives off so much heat.  He also said that the first appointment takes a lot longer than the actual radiation treatments will take.  Well, yesterday I had to go in and do the same thing again but I was prepared this time.  The first time I had worn flip flops and no hat so yesterday I wore my Ugg boots and a knit hat.  It really did help quite a bit and it was much less painful.  

For the next 6 weeks at 2 o'clock every week day I will be receiving radiation therapy.  I am praying that I will receive only the good effects of the radiation and I will not be affected negatively in any way.  

An update on my little Ezekiel:

I have had every intention of posting this big long beautiful post about my little miracle baby.  I have videos and pictures that I intend to share but it's just like his baby book.  I have good intentions, it just never happens.  It seems so inadequate to just add on an update to just any old post but it will probably never happen if I don't do just that.

My beautiful, sweet, happy, and perfect baby will turn 5 months old next week.  He cut his first tooth yesterday, graduated into size 4 diapers and size 12 month clothes, and has started eating solids.  Last month at his 4 month check up, he weighed in at a hefty 21 pounds and 27 1/2 inches long.  He is the most socially interactive baby I've had.  Sometimes if I just look at him it's enough get giggles out of him.  He is a little chatter box, constantly expressing himself by cooing and blowing raspberries.  He is amazing!  He is a source of joy for our entire family.  We all think he is the smartest, sweetest, most wonderful baby ever.  This is the baby I have loved since he was just a couple of dividing cells.  

Warm Bodies

Several weeks ago I read the book Warm Bodies. Yes... a book about zombies.  It's not my usual genre but I'm one of those people who insist on reading the book before I watch the movie.  I saw the preview for this movie and it looked hysterical so my sister-in-law and I decided that we were going to see the movie.  We haven't seen the movie yet but we have both read the book.  Anyhow...  The book is about a zombie whose name is "R".  He calls himself "R" because he has no memory of who he was before he turned into a zombie.  "R" meets a human girl and saves her from the other zombies.  He begins to grow self-aware.  He starts to feel things both emotionally and physically and he eventually turns back into a human.  Chemo had kinda turned me into a zombie.  The past several weeks I have been slowly becoming more self-aware.  Every day I start to feel a little bit more normal.  I can feel the fog lifting from my mind.  I have almost completely regained all the feeling in my fingertips.  I have the energy to think and to feel.  I have begun to feel human again.  It's the most unusual experience... literally feeling like I'm coming back to life.

I have started to exercise.  My friend Heidi talked me into taking one of her classes on Mondays and Thursdays.  Last night I was extremely close to tears half way through the work out.  I am doing a modified workout from what everyone else in the class does and I'm doing less reps and I come in last every time... by a lot.  As I was doing the exercises I started to make excuses for myself in my head.  "You just finished chemo.  You've had 2 surgeries.  You had a baby 4 months ago."  I started to feel defeated.  I got discouraged and it caused me to get a catch in my throat.  The catch in my throat caused a tightness in my chest as I held back the tears of frustration and anger.  And then I got a horrible stitch in my side and pain in the muscles around my expander.  And then I couldn't run.  It was exasperating.  It's going to be a lot of work getting back in shape.  I'm going to have to learn how to deal with this disappointment in myself so that it doesn't get in my way.

Tomorrow is my first day of radiation.  I thought I was starting today but when I got there they informed me they had given me the wrong start day. I found that pretty irritating.  Six more weeks and I will finally be finished with treatment.  I can't wait to be done.