Friday, November 22, 2013

The Lung Update

I don't have cancer in my lung.  My oncologist called me the same day of the PET scan to inform me of the good news.  I was so relieved that I cried.  So...why has it taken me so long to get on my computer and share the good news?  I am so emotionally exhausted and burnt out on cancer that I am just completely unmotivated to talk about it.

This recent "scare" was not actually as scary as I expected it to be.  I continued to go on with my daily life as if it wasn't even happening.  There was such a huge difference in the way it felt this time as opposed to when I was first diagnosed.  I have become used to the fear that comes along with a cancer diagnosis.  It's just a part of my life now.  I have to think about cancer on a regular basis with blood work, scans, and appointments.  I've done this all before so cancer no longer scares me.  Death scares me though.  There were a couple times where I looked at the kids and the thought of their lives without a mom made me weep.  But I don't need to think about that because I do not have cancer in my lung.  We don't know what it is but I'll be going to a pulmonologist for a consultation.  My oncologist didn't appear to be concerned and if he's not concerned then I'm not concerned.

Thank you for your continued prayers.  I have definitely felt the blessings pouring down on me.

Tuesday, November 12, 2013

Hoping its Nothing

Last Monday I finally had my MRI for the bone infection. Two days later I got the results. No bone infection but there is a 1.5 cm spot on my lung. So, today I am off to get a pet/ct scan. Strangely enough, I haven't been thinking about it too much over the weekend. I felt happy and light hearted despite the upcoming test and the possibility of cancer.  I was extremely nervous before I got the results of my blood work. The cancer antigen levels came back very low. Actually one marker was lower than my last blood work 2 months ago. That gave me a little peace of mind but it doesn't mean that this isn't cancer.

Yesterday I was on a meat and greens only diet.  Today I am fasting before the scan. The only thing I am allowed to consume is the plethora of meds. Antibiotic, estregon blocker, vitamin, and today I took some diazepam. Anything to help with the anxiety I know will hit once I get into that machine. I'm already feeling a little loopy from the meds.  Prayers please for clear scans. 

Friday, October 11, 2013

Adam Gave Up a Rib... I Guess I Can Too


Infections are a nasty thing.  I've been battling this stupid infection at my mastectomy site for I don't even know how long.  I know the severe pain started when I was going through radiation.  I suspect that the infection started long before radiation back to almost a year ago when I had my expander surgery one week after Zeek was born.  That makes the most sense to me.  That would have given this infection plenty of time to wreak havoc in my body.  I went back to the infection doctor yesterday because the infection symptoms keep coming back every time I go off of antibiotics.  He thinks it's a bone infection.  Bone infections are very difficult to treat.  When he said that, it scared the crap out of me.  Are you saying I'm winning the battle with cancer but an infection could kill me?  He said no but he will need to be very aggressive in treating the bone infection and possibly need to surgically remove the suspected rib.  Zeek and I left his office and I started crying tears of frustration.  I want to be done.  I don't want to lose any more time or body parts.  I've lost my hair.  I've lost a boob.  I've actually had to go through the emotional loss of my breast three times now.  The first time when I had my mastectomy.  The second time when we found out the expander was put in the wrong place.  The third time when I had to have the replaced expander removed because of infection.  Now I might have to have ribs removed?  How much more disfigured can I become?  Yes...poor me...poor me...but today all I can think of is... You can take my hair, you can take my breast, you can even have some ribs... but you cannot take my life... you cannot take my joy.  Cheesy, I know.  I'm feeling the cheesiness... especially today when I'm feeling down.  But I believe in the power of positive thinking, fake it 'til you make it, denial... whatever works to keep me out of the dumps.  Most of all, I trust God with my life.  My suffering is nothing compared to what Jesus endured here on Earth.  I don't say that lightly either.  It's not just the good Christian thing to say.  I truly believe it to the depths of my soul.  My suffering is pretty insignificant in the grand scheme of things. 

Well, on to bigger and better things.  The party in celebration of Ezekiel's 1st birthday, my being cancer free for one year, and a housewarming party all together on one big happy day.  October 27th is the day.  I would really love for everyone to come.  I want to celebrate with all of you who have walked with me through the past year and a half.  You have supported, encouraged, loved, and prayed for Ezekiel and for me and I am so grateful for you all.  I sent out a FaceBook invite and sent an evite to those who I have email addresses for but if you haven't received an invite and would like to attend, please send me an email and I will send an evite.  Rebecca.d.raymond@gmail.com (Lisa Gallardo- you have been a huge blessing to me through all your encouragement and love and meals.  I don't have your email address but I would love it if you could come.)

Sunday Zeek and I will be doing a 5k fundraiser for the Cancer Center of Santa Barbara.  This is where I received all my treatment.  All monies raised will go towards research for clinical trials.  Last year my friend Heidi did this even in my honor.  I was 9 months pregnant and bald and had tears in my eyes as I watched her cross the finish line.  I get emotional just thinking about what it means to me to be able to do the event this year while pushing my precious little breast cancer survivor in the jogger.  If you are interested in sponsoring me, here is the link for my donation page.
https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1075922&supId=392408481

Thursday, September 19, 2013

Fitting in

The kids are off to school, the baby is down for a nap, the husband is upstairs working and here I sit in the backyard on my computer with a cup of coffee...it doesn't get much better than this.  I feel so blessed.  How can I not when this is my view.



There's a lot of talk about how to adapt to life after treatment.  I've put a lot of thought into this.  At first I was feeling like I didn't fit in anywhere.  I don't really feel like I belong with any one group of women.  Moms with young children... that's me but what do I really have in common with them other than the fact that I'm a mom?  Breast cancer survivors... that's me but what do I have in common with them other than the fact that we both had breast cancer?  Where do I fit?  That's when I really got to thinking about my situation.  I've never really 'fit in" but have any of us really "fit in"?  We have all had these personal journeys through life that are totally unique.  No matter how extreme our experiences are, none of them are the same.  I believe that I now "fit in" more than I ever have before.  The life experience God has given me has allowed me to connect with people in a new way.  I truly believe that I have a deeper capacity for love and compassion, for empathy and sympathy, for relationships.  I "fit in" with moms who are juggling all the responsibilities of being a mom.  I "fit in" with women (mostly older ones) who are diagnosed with cancer.  Most of all, I "fit in" with people who are going through a traumatic event in life.  Cancer has left me with a new understanding of fear and pain.   No matter what kind of traumatic event has happened, I feel connected to and understanding of that person's pain.  Before cancer I couldn't understand.  A person going through a traumatic experience left me with only these words... "I can't imagine what you're going through."  That is no longer me.  I can imagine it too vividly... the pain and the fear.  And you know what... it is the biggest blessing I have ever received.  I've always believed that pain is a good thing because without it how can we truly know happiness. 

Moving to a new city has been refreshing in the sense that no one knows that I ever had cancer.  It's up to me whether I want them to know.  As far as my neighbors know, I'm just a mom who likes having short hair.  It does get a little awkward sometimes when I meet people and we start talking about our lives and I get to a point in the conversation where I have to make the decision about whether or not to spill the beans.  Sometimes I don't want to shock people with my story.  There's no way around it... pregnant with cancer is shocking.  Conversations can lead to my history with cancer more quickly than you would think.  I'm going to pick up my prescription... I'm having a hot flash..  I had surgery in June... I'm on antibiotic for an infection... I'm not breast feeding... all of these statements that I make lead to one thing.  Yes, I'm on medication to stop my ovaries from producing estrogen which fed my cancer and it causes hot flashes.  Yes, I had surgery to remove my fake boob that I had to get because my real one got chopped off after it was invaded by cancer.  Yes, I have an infection in my chest wall where I used to have a breast.  Yes, I tried to breast feed but I had to start chemo again... and no you can't breast feed while you're being injected full of poison.  Don't get me wrong.  It's not that I want to avoid the topic of having cancer.  I just don't want every conversation to lead there because sometimes it gets awkward.  I also don't want people to see that when they see me.  I want to be known as Rebecca not as "that chick who had cancer while she was pregnant".

The infection is back.  I started antibiotics a couple days ago.  I'm really frustrated by the infection because it makes me worry about my immune system and the fact that it's not doing it's job.  Other than the infection I'm doing really well.  I've started walking the hills around my house.  It's an excellent workout.  It feels good to be able to push myself physically again.  I'm really looking forward to getting back in shape.  I took a picture of myself yesterday after I'd climbed to the top of the hill I live on... please excuse the bed head. 

The big bubba will be 11 months old next week.  He has started taking his first solo steps already.  I can't believe how advanced he is.  He is truly a little miracle in our lives.  I will be throwing a really big party in October.  Everyone is invited...details to follow.  It will be a 1st birthday / 1 year cancer free / house warming party.  So many things to celebrate!

Thursday, August 29, 2013

Labels

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?



 

Wednesday, June 26, 2013

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. 

Monday, June 17, 2013

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. 


Sunday, June 16, 2013

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. 

Thursday, May 23, 2013

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.

Sunday, May 19, 2013

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. 


video

Friday, May 3, 2013

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.

Saturday, April 20, 2013

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.

Thursday, March 28, 2013

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.

Wednesday, March 20, 2013

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.  

Tuesday, March 12, 2013

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.

Wednesday, February 20, 2013

No More Chemo!

I am officially done with chemo.  I went to get treatment on Monday and met with my oncologist beforehand as usual.  I told him about a new symptom I started experiencing this past week.  My fingertips hurt.  It's not the same kind of shooting pain I experienced before that would come and go.  This time it feels like my fingertips got slammed in a car door and the pain doesn't go away.  They throb and are numb and if I try to use them it hurts horribly.  I can't really do anything with them that requires for me to pinch two fingers together or that requires me to apply pressure with my fingertips.  I also have what looks like bruising underneath my fingernails.  I didn't really think too much about it.  I honestly have been trying to ignore it and with sick kids, it's not like I've had much time to think about it anyway.  Well as soon as I told Dr. Kass about it, he got this pensive look on his face.  He then informed me that I'm done with chemo.  He's not giving me my 12th and final treatment of taxol.  He said that the benefit of me getting that last treatment does not outweigh the risk of the neuropathy getting a lot worse with this last treatment.  He said I've had enough treatment with the 6 chemotherapy during pregnancy and 11 more afterward.  I was in such a state of shock when he told me this.  I'm not very good with changes in the plan.  I know I'm too black and white but missing number 12 just didn't feel right.  I actually told Dr. Kass that he should go ahead and give me the treatment anyway because it's just pain and I can handle the pain.  Silly... I know. I really trust Dr. Kass.  He knows what he's doing.  Besides, this pain in my fingertips is really inconvenient and I really would rather that it not last for months and months.  So that's it... no more chemo... just like that.

I'm really looking forward to having a life again.  I feel like now that I'm done with chemo I can get back to being me.  I have gotten so worn down physically and emotionally that I couldn't even get excited to be finished with chemo.  My sister asked me if I was excited to be done and I just sat there thinking about it and finally I told her that I am too tired to even know how I feel.  I'm ready to move on from this place.  Next stop... six weeks of radiation.  

Me and my wonder nurses

Friday, February 15, 2013

Sick Kids

After kissing Zeek on the mouth all day long, I took is temperature tonight and he is running a fever just like his 3 older siblings. I kicked myself as soon as I realized he had the fever. The other kids are sick and I should have been more careful. I thought I had kept Zeek protected from them enough that I wouldn't have to protect myself from Zeek. As a mom, it is one of the worst feelings in the world to have sick kids. I just want to hold them and make them feel better. Zeek is feeling miserable and tonight as he was snot nosed and crying, every fiber of my being wanted to just dismiss the danger he poses and scoop him up and kiss away his tears. I'm sure I've already been exposed but if there's any chance that I haven't, I need to keep my distance. My counts are low and I so desperately don't want to get sick. Besides... I really need to start growing hair again and if I can't do chemo this Monday then my hair growth will be set back an entire week and that is completely unacceptable. John took Tobias to the doctor this afternoon because he's had the fever for 5 days now. The doctor prescribed tamiflu for the other 3 kids. I called around to every pharmacy in Ventura and none of them had it in stock. I finally found it at a pharmacy in Oxnard. That is some really expensive stuff. I'm hoping the cost reflects the effectiveness.

Prayers are so greatly appreciated!

Monday, February 11, 2013

Joy

It's chemo Monday!  Chemo Monday means steroids.  Steroids mean I have enough energy to come up with the words to update my blog.  Number 11 of taxol chemotherapy complete.  Number 17 total since I was diagnosed.  That's a whole lot of chemo.  ONE MORE LEFT!  In one week from today I will receive my last infusion.  That statement seriously brings tears of joy to my eyes!

Today and yesterday have been two really hard days for me emotionally.  I have been inundated with a complete assortment of crappy emotions.  Those crappy emotions have been exacerbated by a child with a 102 degree temperature, a piece of my son's braces falling off, my daughter crying herself to sleep last night because she's afraid I'm going to die because I got too close to her brother with the fever and then she was feeling sick today, a baby who didn't take a good nap all day yesterday, and then to top it all off I only got two hours of fitful sleep last night.  I  couldn't fall asleep and then when I finally did, I could only drift in and out of sleep and woke up to every little sound as if I was listening to hear the front door open.  Some of those crappy emotions I've been feeling are associated with guilt.  I have a pretty bad case of mommy guilt.  I feel guilt for not wanting to hold Zeek when I'm feeling exhausted and out of energy.  I feel guilt for constantly scolding my son who has ADHD and showing my constant frustration with his inability to follow simple instructions.  I feel guilt for hating homework.  Homework is exhausting!  Homework is by far the most unenjoyable parenting responsibility.  The list goes on and on.

Last night my sister called at just the wrong time.  I ended up unloading all of my crap onto her, venting my frustrations, and crying my eyes out.  This morning I woke up feeling despair and like a failure.  I went to chemo and sat through it like a zombie, too tired to feel or think.  On the drive home, the steroids started to kick in.  I got home and tried to take a nap but the wheels had started turning in my mind and I couldn't turn them off.  I got up out of bed and put my hands to work crocheting myself a hat.  As I was sitting there I started to think about this past ten months and the different places I've been emotionally.  I thought about the ups and the downs.  This current period of feeling down has been a long one.  I have been feeling "poor me" for a couple of months.  I knew my weaknesses would be revealed through this process and surprisingly I'm not embarrassed by it.  I can look back and read the tone of my blogs and see the "poor me" in my words.  I can recall conversations where the "poor me" is palpable.  The hope at the end of this journey has been too far away to allow myself to feel it.  Without hope, what else is there?  The answer for me... self pity.  As I was sitting there realizing how pathetically human and imperfect I am (like this is totally some kind of profound revelation), I cried out to God in my heart.  "I am done trying to fake it through this part.  I want to be filled with joy despite my circumstance.  Fill me with joy."  And that was that.  Tonight I look at all those crappy emotions I was feeling and they don't seem so bad.  I can't dwell on those crappy emotions if I'm filled with joy.  This will be a daily struggle for me... to not just know that I am blessed but to feel the joy of those blessings.  I want to not only feel the joy of His blessings but to share His joy as well.

"Bring joy to your servant, Lord, for I put my trust in you."
Psalm 86:4

"When anxiety was great within me, your consolation brought me joy."
Psalm 94:19

Monday, February 4, 2013

Perspective

It's Monday... the chemo kind of Monday.  Ten down, two to go kind of Monday.  The kind of Monday where I can see that light at the end of the tunnel getting so much closer.  The kind of Monday where I actually thought about having hair again (tear).  All I could think about while I was in treatment today was that I will be finished in two more weeks!  I want to tell everyone in the treatment center (where they've stuck me with needles and pumped me full of poison) that I'll never see them again because I am done with cancer forever.  But can I say that?  Can I say that  I believe the cancer is gone and will never return?  I'm so afraid to say it because I'm afraid of being wrong.  But you know what?  I said it anyways!  I said to my nurses, "Two more treatments and I won't ever be back."  Of course it's not true because I love my nurses and when I go to see my oncologist for my regular check ups, I will definitely stop in to see those wonderful ladies who have taken such good care of me.  In the end, if I'm wrong... well then... I'll just be wrong.  But I am believing with as much as I can that I am right!

For the past several weeks I have really been struggling.  My treatment has been so long and drawn out.  It has been such a long time to be in a place physically that I have no control over.  I am miserable physically.  I've complained about it all before... over and over and over again.  It's getting old.  I'm sick of complaining. I just want to fix it already.  I'm ready to get on with my life but I can't because I'm stuck in the muck of side effects from chemotherapy and discouragement from all the extra pounds I've put on and not being able to exercise until this stupid cold goes away (going on 3 months now).  Today I even started with a new side effect from the chemo.  I am now experiencing numbness, tingling, and throbbing pain in my hands.  This is bad new for the mom of a baby that needs to be carried... especially for a mom who really dislikes asking for help. I thought I had avoided this common and dreaded side effect but here I am experiencing it right at the end...and thankful it waited until the end to rear its ugly head.

At my appointment this morning, Dr. Kass (my oncologist) informed me that my counts are borderline low and he expects that they will stay there for the rest of my treatment.  I'm assuming that this means my cold will be staying for a little while longer as well as the continuous bloody nose and the mouth sores as my body can't heal very well while my counts are low.  Continued prayer for the health of those around me for the next few weeks, please!

I'm struggling physically which leads to a heightened emotional struggle.  When I find I am overcome with frustration and discouragement, my perspective on life needs to be put in check.  Today I was reading an update from my friend who like me was diagnosed with breast cancer while she was pregnant.  I hope she doesn't mind that I'm quoting her but what she said brought tears to my eyes because I see so much beauty in what she said.

"I am jealous of old ladies.  This morning in radiation, two old ladies were complaining about their cancers.
Both had lumpectomies and were now in for their required radiation.  I wanted to stop them and tell them
how envious I was of them and their YEARS they have been on this earth probably raising babies and
vacationing and living life.  Old ladies look at me and my skin and want it.  I want wrinkles.
How ironic, huh?  I long to be old and vertical.  Ladies...those in their senior years...you are so blessed.
Think how many people wish they could be like you and never got a chance due to cancer, tragedy, heart
disease, etc.  You are the most blessed people of all!  A grandmother in my opinion has it all...
being able to see your children's children.  So don't be envious of youth....
Be thankful for you have been blessed!"

I was impacted by another quote I came across tonight from a book called Same Life, New Story.  I LOVE this book.  I believe this book to be so relevant as it talks about changing your perspective in order to change your life.  It reminded me of a conversation I had with a dear friend this past weekend.  We became friends in high school and then lost touch for many years.  We got together one on one for the first time in a long time and caught up on life.  What was shared was so painful but there was so much beauty in it.  Pain is part of life.  Life is beautiful.  My friend shared the pain of her story with me and I saw beauty.  When I was first diagnosed I was told I would look back at this year as the "lost year".  I hope not.  I don't want to lose any time at all... even if that time was filled with pain.  My hope is that those who know me can look back with me and see the beauty in my painful journey.  Perspective put in check.

"Life is a whole string of nows knit together with friendship and songs, 
heartaches and tears, fears and courage, passion and compassion, 
depression and elation, patience and impatience, and more...
So don't miss life.  
Take up your life and walk, whether it's happy or sad,
 angry or disappointing, ecstatic, hopeful, heart wrenching or tender.  
You name it.  
Just don't miss it."


Monday, January 28, 2013

Feeling Good - and it's not because of medicinal marijuana

I feel good.  I feel like singing Simon and Garfunkel's, For Emily.  

Watch Simon and Garfunkel - For Emily

I don't know why I feel like singing this song because it's a love song to a woman.  I was thinking about the report my 2nd grader is doing on Martin Luther King Jr. and the I Have a Dream speech.  My dream isn't on the scale of Martin Luther King's.  It's on a much smaller scale.  What a dream I had...but it wasn't dressed in organdy or clothed in crinoline as the song states.  My dream is one of the heart.  I love when my heart is medicated by friendship.  I can't explain how my heart and soul are revived by the love of people.  The definition of revived that I looked up is below. This is the perfect word to use for how I feel in this moment.

REVIVED   past participle, past tense of re-vive (Verb)

verb
1. Restore to life or consciousness: "both men collapsed, but were revived".
2. Regain life, consciousness, or strength.


Today I completed round 9.  I talked on the phone with two of my dearest friends, Nicole and Stefani, from my old stomping ground in Tracy, CA.  I talked with my best friend Ember.  I talked on the phone with my sister-in-law.  I texted with my awesome, butt kicking, trainer/nutritional counselor friend, Heidi.  She's going to help me get my physique turned around from frumpy/fatty to strong/healthy.  Love her!  I saw my inspirational friend Rhiannon briefly tonight at my nephew's high school basketball game.  I love basketball!  I get such a thrill watching the game.  Friends and basketball... medicine for the soul.  Oh boy!  Now I'm feeling so good, so nice, like sugar and spice.  I feel like singing James Brown.

Watch James Brown sing I Feel Good!

To sum things up... the oncologist prescribed me Ambien which means my day will end in deep slumber.  Today was a great day.  I am blessed.  This post could just be the consequence of chemo brain...but who cares.  I love this post.  It involves Simon and Garfunkel, James Brown, and a vocabulary word complete with definition.  The only thing missing is the Word.

"You have changed my sadness into a joyful dance; you have taken away my sorrow and surrounded me with joy."    -Psalm 30:11

The Lord is my strength.  He has blessed me in a countless number of ways.

Cancer Clique

Cancer sucks... just like so many other things we are forced to go through.  Life is hard.  When it gets hard, that's when we find out what we're really made of.  All of our strengths and weaknesses are revealed.  We make choices.  Some good.  Some bad.  All choices made have an effect on those who love us.  Sometimes relationships are lost but sometimes relationships are established in the most unexpected places.  When I first began this journey, I didn't feel a need to have a relationship with other women who have been through cancer... survivors.  I didn't understand the need for a relationship with other women who "understand" until I actually connected with women who do. I have been so blessed by the survivors who were already a part of my life and by those who have come into my life because I am now fighting this battle.  These are amazing women... my mentor and retired women's pastor of my church, my husband's cousin (who I have only met in person one time 11 years ago), two women from my church, a woman who started following my blog after reading the article on me in the local paper.  And then there's this group of women who have been through and are going through treatment for cancer while pregnant.  These women are like my little cancer clique.  I've never met any of them in person.  We are only friends through Facebook but I feel so bonded with them and invested in their lives and the lives of their precious little miracle babies.  They also help me feel sane.  Knowing that they are experiencing the same thoughts and emotions that I do has saved me from feeling completely isolated.  I also have a greater appreciation for my friendships that have nothing to do with cancer.  I have always loved and appreciated my friends but having limited interaction with my friends over the last several months has brought me to a place of deeper appreciation.  After Christmas my friend Ember came into town to visit her family.  While she was here we went out for a beer.  It felt like it had been forever since I had gone out and just enjoyed the company of a friend.  It wasn't about cancer.  It was about friends getting together just because we're friends and that's it.  It was so nice.  Last weekend I met up with two other friends at the park with the kids.  We just stood there and talked while the kids played.  It was such a normal thing to do and it was so enjoyable.  It's been so long since I've done normal things.  It has made me remember how much joy friendships bring me.

I've realized that I've had my head in the sand a little bit through this process.  I haven't paid attention to some of the details of my cancer.  There is so much information and at first it all just felt like too much to process.  Yesterday I got out the copy of my pathology report because I learned something new.  Not only is there a stage for cancer, there is a grade too.  Holy cow... I'm 9 months into this mess and didn't know that!  I also don't even know officially what stage I am.  According to my pathology report, I believe I am (was) stage 2b grade 2.  Tumor size 4.2 cm with 2 of 3 lymph nodes positive.  I could possibly be a more advanced stage due to the fact that there was skin involvement.  I will be asking more questions at my appointment this morning just so I have a definitive answer.

After today I have only 3 more treatments left.  I can't wait to be finished with chemo.  The side effects are getting really old.  I've had a continuous bloody nose for two weeks now.  It's not a lot of blood but just a slow seeping that has to be addressed every 15 to 30 minutes.  I know... disgusting, right?  I think I've only had a bloody nose once or twice in my life before this.  The other side effects are still the same.  Sores in mouth, sore throat, throbbing and weakness in my forearms and shins, and headaches... oh and lets not forget the hair loss.  I can't complain too much though.  I'm not experiencing the neuropathy in my hands and feet like my sweet friend Sarah who is finishing up with taxol after her pregnancy too.  Thinking of her makes me want to remind anyone reading this to please check your breasts.  I was 32 when I was diagnosed but Sarah is only 25.  Check your breasts.  Schedule a mammogram.  Do it!

Monday, January 21, 2013

Bald Chemo Kisses

Ezekiel (12 weeks old) and me... Twins?

Last night I went out to dinner with my family.  The restaurant was so hot that half way through dinner I started to sweat.  I was holding the baby while eating and had a sweater and a hat on.  John said, "Why don't you take off your sweater and your hat?"  So I took off the sweater but not the hat.  As I sat there still uncomfortably hot with my hat on, I was ashamed of myself for being weak and insecure.  I consciously looked around the restaurant at all the people who I could care less about whether or not they see me bald but I thought about the waitress and imagined the look of shock on her face when she returned to our table to a cancer patient and not just a lady in a hat.  I couldn't do it.  I couldn't take off my hat.  How is this now me?  Three months ago I was shamelessly going out in public with a bald head and a pregnant belly.  So, I'm left wondering... I'm left analyzing this change in myself.  Boy, does cancer force you to come to take stock of the type of person you really are.  I've come up with a couple of possibilities as to why this embarrassment of my baldness has come about.

Being bald while pregnant vs. bald after baby:
1. Pregnancy provides the most amazing release of hormones.  Hormones made me feel pretty good.  My oncologist said I pretty much breezed through the first 6 rounds of chemo that I received during my pregnancy compared to most of his other breast cancer patients.  In other words, I didn't really feel sick.  I felt pregnant.  I felt in awe of my body that was growing a precious life while fighting cancer.  Being bald wasn't so bad because my pregnancy was more relevant.
2. Baldness after baby is not so pretty.  I am really looking sick these days.  The chemo is really taking it's toll this time around.  Sometimes I look in the mirror and I'm shocked.  I have a bald head with a rash making it look red and splotchy in places.  My face is constantly pale.  I have dark circles under my eyes and sometimes my eyes are also red rimmed.  My face is looking pretty pudgy these days too.  I try to blame the pudgy face all on swelling from the steroids but that doesn't explain the pudge on the rest of my body.
3. After I was diagnosed it felt like everyone knew what was going on.  Everyone expected it when I lost my hair.  Everyone was aware of my battle.  And then I finished up my chemo during pregnancy, my hair started growing back, and my little miracle baby was born.  All those prayers were answered.  I have a beautiful and healthy baby boy who is thriving...my beautiful gift from God.  A concrete answer to prayer that people can see with their very own eyes.  Then I started chemo again and it got cold outside and all of a sudden I am wearing hats and it's almost like it's my little secret...I'm not done yet.  I am still weak and fighting a battle for my life and if I have to look people in the face and admit that I'm not just "all better" like they might think... it just makes me wish it really was that easy.  I've had several comments about my short hair and I had to say, "Nope, I'm actually bald again."  And then I get a look of surprise and I get to explain that I had to start chemo again.  It felt like I was delivering really disappointing and unexpected news.  It's not a very fun conversation to have.
These are the reasons I've come up with so far as to why I am currently uncomfortable with my bald head.  Tomorrow I'll probably have yet another reason.  Actually, now that I think about it... the whole rash thing makes my head look pretty unattractive... another reason to wear a hat.  The only problem is that hats make the rash worse.  Catch 22.

The other day, after looking in the mirror and grimacing, I decided to go for a walk with Zeek while the big kids were at school.  And then I thought... why walk when you can run?  So I buckled Zeek into my new Bob Jogger Stroller, laced up my Nikes, put on my beanie (I wasn't about to jog around the neighborhood with a bald head), turned on Pandora, started up my couch to 5K app, and I hit the pavement.  Oh boy was I hitting that pavement hard.  Every drop of my foot felt like I had 100 pound weights attached to my ankles.  The sight I must have been... after 9 months of inactivity and 40 extra pounds... trying to jog for one minute straight and then walk for a minute and a half and alternate doing that for 20 minutes. My jogging pace was around the same as my previous warm up walking pace.  It was completely pathetic.  My husband didn't know I had attempted to jog while I was out (I didn't want any witnesses) and when I returned home he was extremely concerned by my fluorescent face and my inability to move from the couch for the rest of the day. The next day I decided to go for a walk again.  This time I took all the kids and I walked myself right up the street to Foster's Freeze to get the kids an ice cream... more my pace right now.

Today I completed #8 of my post baby taxol chemo treatment.  Only 4 more to go.  Only 4 more.  I can see the light at the end of the tunnel.  I was diagnosed with breast cancer on April 26, 2012.  I estimate the last of my radiation treatments to be somewhere around the end of this coming April.  One full year of treatment... that's a long time.  I can't wait for treatment to be over.  And then again... I'm terrified of it ending too.  No more treatment means I will no longer be actively fighting off this beast of a disease. But then again... no more treatment means that I can start to get my life back.  I can start a different kind of fight.  Rebuilding my health through diet, exercise and scripture, re-establishing my role as a healthy wife, mother, daughter, sister, and friend... these are things I am looking forward to... Oh... and kissing my kids.  Yesterday Tobias asked me when he can kiss me on the lips again.  I told him after 4 more chemo treatments.  He said maybe I could kiss him on the lips for his birthday which is this Friday.  This is a birthday request I cannot deny.  My sweet Tobias has always been my little snuggler.  He will turn 8 years old and wants a kiss from me on his birthday.  My eyes well up with tears and my heart is full.

Tuesday, January 8, 2013

Complaining Again

I'm at the point where I'm just wondering what the hell happened to me. Throughout my pregnancy I didn't really think about much other than the precious little boy I was trying to grow. After he was born I had a couple months of exhaustion where I couldn't even think at all. Now that I've found my way to the other side of that post baby haze...I'm left to wonder...what the hell was that...this...all of it?

During my pregnancy, my experience with chemo wasn't too bad. I was sleeping well and the side effects were very minimal. This time it feels so different. I'm sure a lot of that has to do with the lack of sleep I've had. It's just hard to feel good at all when you're sleep deprived. I'm wondering also if the lack of sleep might be related to the side effects I'm experiencing this time. You know that feeling you get when you're watching a really touching movie and you start to feel that tightening in your throat? I guess it would be called getting all choked up... Well that's the feeling I have in my throat all the time. Except mine didn't come from watching a touching movie...it came from a horror story. Ha! That was a good one. Anyhow, I also have a lovely rash on my head. The oncologist said it was also a side effect of the chemo. Mouth sores... I didn't get them with the last chemo drugs (which is when it was more likely) but I have them now. Neuropathy is the least enjoyable side effect of all. Weakness, numbness and tingling in the extremities is a pain in the butt. I've found a way to ignore it most of the time. The absolute worst part of this all has been the weight gain. I talked to my oncologist about it today and he said not to worry about it and that I can deal with that after I'm through with treatment. I said, " You mean after I've gained another 30 pounds?" I have continued to gain weight since Ezekiel was born. My oncologist said that's just the price we pay when pumped full of steroids that make you feel extremely hungry all the time. He also said that my lack of sleep is probably contributing to the weight gain. I'm pretty disappointed that I couldn't just experience nausea as a side effect to take care of the weight gain for me. Just kidding...I wouldn't really wish that on myself. I know that most of the problem is my inactivity. I just can't seem to find the energy to get up and get active after so many months of not being able to. I wonder how many times I'll complain about this before I actually just do something about it?

Another crappy thing about this whole chemo thing is that I am at the point where I'm irritated so easily. Every week after treatment I immediately get asked about 50 times how I'm feeling. I feel like crap...can that just be a given without being asked and making me have to think about how crappy I feel...because I was doing a really good job of ignoring it. I usually just lie and say that I feel fine because I don't have the desire or the energy to explain how I really feel. See? I have a really bad attitude right now.

A couple weeks ago, shortly after I had to shave my head again, I was asked how I am doing. The first thing that came to mind was the loss of my hair and how upsetting it was for me. After that conversation I started to wonder if I'm a vain person. Why, with everything I've gone through did I choose to mention my hair? I've decided to give myself the benefit of the doubt on this one and explain it by saying that I'm more affected by the emotional trials as opposed to the physical pain. Ive learned how to live with pain from all the broken bones and other sports injuries I've had. But the pain of loss...hair, breast, healthy body, self-esteem, friendships... those are the things that weigh heavily on me. The relationships most of all. No one really ever talks about how hard this situation is on relationships. Almost every relationship I have has been affected by cancer...from my children to my friends, from my sisters to my husband.

Yesterday I completed number 6 of 12 taxol, number 12 of 18 chemo treatments all together. I was telling my sister earlier today that I was half way done and then I decided to correct myself. I am two thirds of the way through chemo. That sounds so much better. I can't wait to be done!