Tuesday, July 24, 2012

Back to Reality

I am home from vacation and back into the swing of things with doctors appointments, basketball camp and birthdays.  We got home late Saturday evening.  I spent Sunday doing laundry and unpacking, none of which are finished.  I'm bummed that I didn't finish because yesterday morning I had round three of chemotherapy. It seems like every time I have chemo, the fatigue hits me harder and faster.  When I got home from treatment yesterday I was useless for the rest of the day.

I felt a little rebellious yesterday, walking into the cancer center with a bald head.  I have never seen anyone else go bald there.  They all wear hats, wigs, or scarves. It kinda surprises me.  In Tahoe I got used to going bald.  But as soon as I got home I got uncomfortable with it.  Sunday morning we were getting ready to go to church and I started to get anxious about it.  It's really silly but it's not even necessarily about showing my bald head.  It's about being bald and having people know that I'm bald.  I thought about wearing a hat but that didn't help things.  The fact is that people will look at me and know I have no hair....whether I'm covering it up or not.  I think that's why going bald and just getting it out there and making the statement on my own terms is easier for me.  It makes me feel like I have some sort of control over it...like I don't have to hide.

Today I go back to the cancer center for my $5,000 shot and then I'm off to my OB.  I'm planning to hear that my placenta previa is completely resolved and I can start exercising immediately.  I am desperate for this news because while on vacation I gained 10 lbs.  Yes, TEN POUNDS in two weeks and I am very unhappy about it.  I am 27 weeks pregnant tomorrow and have officially only gained 10 lbs from my pre-pregnancy weight but that doesn't take into consideration the weight loss from the mastectomy or the weight I lost at the beginning of my pregnancy.

I decided to post some pictures from vacation.  We had such a nice time.  The kids had the time of their lives catching crawdads, swimming in the lake, exploring the forest and climbing rocks with their cousins.  Watching my kids spend their vacation doing the same things at the same place I did them when I was a kid brought me so much joy...even though we went through an entire large box of band-aids.

Daphne, Ephraim and Tobias at 8am in North Tohoe
Daphne, Tobias and Ephraim
Ephraim, Grandma Daphne and my little Daphne



Daphne, Tobias and Ephraim
My family - minus my brother Thor's family and my step-son Sebastian
I'm telling Daphne to stop giving her cousin bunny ears.   It makes the picture perfect.
Tobias and Me

My sister Laura, my mom Daphne, my brother Nate, me and baby boy, my dad Al, and my sister Cyndi
The Raymond Family

Monday, July 16, 2012

- - - - -

It's 5 am and I'm sitting here on the couch while on vacation in Lake Tahoe because I'm unable to sleep.  Yesterday I was on the verge of tears all day long and then this morning I woke up at 4 am with tears uncontrollably running down my cheeks...and I'm pissed off about it.  I'm tired of this cancer crap.  I'm tired of feeling fragile.  Cancer is a dark cloud hovering over my head that I can't escape.  It's with me everywhere I go.  It's part of me.  It's in my missing breast.  It's displayed on my bald head.  It's all I think about.  I'm tired of it being the topic of conversation.  I don't want to be treated special because I have cancer.  I don't want to be sitting here on the couch feeling sorry for myself because of cancer.

I get jealous.  I see pregnant women or women with newborns and I feel jealousy...and I feel stupid for feeling jealous.  I'm carrying my baby to the best of my ability and my body is doing a pretty good job so far, so I don't understand the jealousy.  Yeah, I don't get to enjoy this pregnancy the same way I would if the circumstances were different but is that something I should really feel jealousy over?  Pregnancy is filled with fear of the unknown whether you have cancer or not.  I will miss out on breast feeding my baby.  I will be going through chemo with a newborn.  So what?  My baby boy is a miracle. I have no reason to be jealous.

I'm filled with conflicted emotions.  I read back over what I've typed and tell myself to get over it, just deal with it, to stop allowing it to affect me in such a negative way.  But then I rationalize my feelings.  They are a display of my weakness...my flesh.  My fickle emotions.  I'm feeling down right now...in this moment.  I know my emotional routine.  I get down, I vent and then I move on.

Physically I'm doing okay with the exception of the occasional nausea.  Smells affect me greatly and can bring on a wave of nausea in an instant.  Yesterday one of my kids ran back from the beach to our cabin to go to the bathroom and didn't make it in time.  I wasn't able to clean it up without getting sick.  The smell of alcohol on people is another thing that affects me pretty severely.  It gives me a lump in my throat.  It feels like I'm just about to get sick to the point where I want to, just to get it over with.  When my husband has had a drink before bed, it's difficult to fall asleep until the nausea subsides.

I've still been going around bald most of the time.  I'm getting used to it...possibly starting to accept it.  Although, I don't feel like I can ever truly accept it because I'll always be waiting for the day when I finally have hair again.
  

Wednesday, July 11, 2012

Floating Prosthesis

Have you ever considered the difficulty of finding a mastectomy/maternity bathing suit?  I just googled mastectomy/maternity apparel just to see if anything came up.  My search came up empty.  When I bought my swimsuit for our vacation I was pretty certain I wouldn't find anything specific enough for my current needs.  My priority was a bathing suit with a place to insert my prosthesis but I made sure to allow ample room for baby growth.  My options were VERY limited.   I am now the proud owner of a grandma bathing suit.  Well, I got to wear my special suit for the first time today.  The kids have been begging me to go swimming with them ever since we got here but I've been working up to it.  Today I was finally ready to join in on the fun.  As I was getting into the pool, Ephraim announced, "Hey, my mom is wearing a fake boob".  He looked over at me and said with a slightly lower tone, "You can even kinda see it coming out her bathing suit".  I look down and my prosthesis is showing above the line of my bathing suit.  Of course, I was in the water up to my shoulders so it was floating a little and no one ever would have noticed had Ephraim not pointed it out.  Oh well.  At least he's happy to claim me.

Today Daphne was playing with a little girl down at the beach and the little girl couldn't stop staring at me.  I heard her ask Daphne about my missing hair but I was unable to hear Daphne's response.  Tonight I asked her what she tells people when they ask about my bald head.  She said, "I just told them you have cancer".  Just like that...no shame.   I've been talking about what I hope to teach my children from this but it seems to me like I really need a lesson from them.

Bald head update:  Today I told my sister that my head kinda looks like a globe.  The ocean is represented by all the bald areas with lots of islands of brown hair that has yet to fall out.  I look much more like a cancer patient now than I did in the pictures I posted.

Tuesday, July 10, 2012

Forgotten Boob

This morning when I went down to the beach with the kids, I totally braved it and went completely bald.  Of course I'm hyper aware of people's reaction to me.  I honestly think that people stare less when I'm not wearing a hat.  Maybe it's because they don't have to wonder what's under or not under the hat...the statement has already been made.  Anyhow, as I'm sitting there watching the kids play in the water, I realize that I forgot to wear my boob.  My initial reaction was to panic a little bit.  I was feeling extremely vulnerable with both my hair and one breast missing.  Then I realized...it really doesn't matter.  I walked down to the beach this way.  None of the people I walked by passed out from shock.  After the initial panic wore off, I was actually relieved.  This is the worst it can possibly get.  I started to think about that dream most of us have had at some point in our lives.  You know that dream where you go to school or work without shoes or in your pajamas or completely naked.  Sitting on the beach with my bald head and one boob, I felt naked...but I was okay.  I am okay and what does it really matter if people stare?  We went back to get lunch and I told my mom and my husband that I had forgotten to put my boob on.  Now every time I go anywhere both of them make sure to remind me to wear my boob.

This afternoon when I was reapplying sunscreen on Ephraim, he said to me, "Mom, at least you still have this".  He was pointing at my cleavage.  It was so funny.  What do you say to that?  He's right too.  The way the mastectomy was done left me with a small amount cleavage.  Leave it to Ephraim to always find something to be thankful for.

Monday, July 9, 2012

Vacation!

The view from our rooms

I am in one of my most favorite places in all the world.  Lake Tahoe!  This might just be the perfect place to get comfortable with my baldness, while I'm surrounded by strangers who I will never see again.

Yesterday we made the long drive.  The kids did well with the drive with the exception of Ephraim puking twice (from car sickness) and also sobbing crying as we passed Tracy on the freeway because he misses his friends.

At one of our bathroom stops, Daphne said to me, "Mom, it's okay if you take your hat off here in the bathroom but once we leave you need to put it back on because I don't want people to laugh at you."  My little girl, worried about what people think.  What a good example I can set for her if I can muster up the courage to be comfortable being bald and to not care if people stare at me.  I could set a great example for my boys too.  This whole thing is such a HUGE teaching opportunity for my kids...one that could impact them for the rest of their lives.

Friday, July 6, 2012

Vulnerable

Being bald has given me a lot to think about.  So far it has been thoroughly unenjoyable.  It's physically uncomfortable and leaves me completely vulnerable to visual scrutiny.  Vulnerability is one of the things I have been forced to think about.  I can't help but laugh at the irony of my situation.  Here I am posting a blog online for the world to read, yet I am uncomfortable with the statement my bald head makes.  The fact is when I post a blog, I do feel vulnerable.  I tend to get extremely caught up in how I feel in the moment and post about those raw emotions with no filter to prevent myself from feeling vulnerable.  When people tell me they've been reading my blog, I think to myself, Oh crap...they know everything.  But this is the position I've put myself in.  I made the choice.  I choose what I share on my blog even though I am lacking a filter.  My emotions are very fickle and sometimes I regret a post within ten minutes of posting it.  I don't delete them though because my fickle emotions are a part of this process and I feel like it would be dishonest for me to edit any of it.

On the 4th of July, my sisters, my mom and I went down town to the street fair.  It was my first time in public with my bald head.  I was wearing a hat and felt somewhat discreet, thinking that people who don't know me would never assume that I am bald underneath.  We stopped at a booth where a lady was selling hats.  She said to me, "I make hats for cancer patients all the time."  Okay, so maybe she could spot me from a mile away because she knows where to look for an easy sale.  But really???  Am I that obvious?  After the street fair we went to lunch.  I was wearing my hat and I could feel people staring at me.  The same thing happened yesterday when I went to Target.  I was wearing a hat but I felt like it didn't do any good in concealing my condition.  An emotion I wasn't prepared to deal with was a feeling of betrayal.  I don't know if that's the best word to describe it but it's the best I can come up with.  Both at lunch on the 4th of July and at Target yesterday, I felt like I was hiding behind my hat (which I was).  I was almost more embarrassed of the fact that I was hiding behind the hat than I was embarrassed of being bald.  This is the confusing part for me.  I am bald and I feel that by hiding behind a hat I am betraying myself.  These are the emotions I'm going to have to figure out because I don't want to spend my days feeling uncomfortable being me.  I'm pretty certain I will not feel comfortable in a wig, which is why I haven't even tried one.  But I didn't expect to feel uncomfortable in a hat.  I have always been more interested in function than fashion.  Hats being used for function make sense to me.  I wear hats to protect me from the sun.   I wear them to keep my head warm.  I now wear them to sleep in because I don't like the feel of my scratchy scalp against the pillow.  To wear a hat so that I can hide...I just don't feel like that's me.  It makes me uncomfortable.  It makes me feel like I am betraying myself.  So now I need to re-examine myself and find out what makes me feel the most like me.  No matter what that looks like, it's going to require me getting used to people staring at me.  I am an unusual sight after all...pregnant with cancer.  I would stare too.

Tuesday, July 3, 2012

Bald, Barefoot and Pregnant

I woke up this morning in a very bad mood.  It took forever for me to fall asleep last night because of the steroids they gave me yesterday during chemotherapy.  When I finally did start to fall asleep I started to get extremely nauseous.  I woke up exhausted, nauseous and my scalp was hurting.  I went to brush my hair and the hair just wouldn't stop coming off of my head.  So I asked my sister Laura to come over and shave my head.  We went to the upstairs bathroom which has the best lighting.  I stood in the tub and she shaved my head.  We both began to cry right before she actually started to shave it off.  My hair is gone.  It's over and done with.  I'm relieved to not have to worry about it any more.  I don't like the way I look and I don't like the way it feels but it is what it is.  I've had such a deep fear of how I will feel to have people see me without hair.  I've decided to just go ahead and post pictures of myself and maybe just knowing that people have seen the pictures will make it easier for me to be seen in public.  Here they are.  The pictures were taken right after my head was shaved.  I hadn't looked in the mirror yet and I wasn't happy at all. 

Monday, July 2, 2012

Round Two

Today was round two of chemotherapy.  It went well but I'm already seeing more side effects this time. About half way through treatment (which takes about an hour and a half), I felt like every ounce of energy had been sucked out of me.  The subtle burning in my stomach started immediately.  It feels like I could be hungry but the thought of eating makes me nauseous.  It's actually very similar to how I felt throughout the first trimester of my pregnancy.  I got home and looked at myself in the mirror and I look like crap.  My skin looks yellow and the circles under my eyes are very dark today.  I did have on a really cute hat though and I also have cute toes.  When I went to get a pedicure with my sister the other day, I surprised myself by choosing a bright pink very summery polish color.  I think I might be looking for ways to draw the attention away from all of my curse of cancer flaws.

The picture below was taken of me and my goofy Ephraim yesterday after church.  I've started wearing hats to keep the hair falling out of my head off of my clothes.  I even wore a hat to bed last night.  I still have a lot of hair on my head even though it's falling out pretty rapidly now.  When I take my hat off, I do it outside and shake my hair out.  The hair doesn't stop falling out so I just go get another hat to put on.  I'm very tempted to shave it off but my husband and sisters keep telling me to just wait until it looks bad.  I think I'm over the fear of losing my hair now even though I think I'll still cry when I finally have to shave it.  Other than the hair, I think I'm doing really well emotionally.  I still feel joyful and I know that this joy is a blessing from the Lord because only He could give me this joy when I feel like crap.  


Today Ephraim told me that this baby in my tummy is God's gift to him.  He said he's been praying for another baby for a long time.  Those were the actual words out of my 8 year old son's mouth.  I adore him.