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.

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.