For the Love of Hair

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

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

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

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

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

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

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

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

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

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

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

Zeek getting his breathing treatment.

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

Venting

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

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

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

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

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

Radiation Begins

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

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

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

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

An update on my little Ezekiel:

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

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

Warm Bodies

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

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

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

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

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!

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