Adjust to the new normal

I don't know how much I really have to say today, but I felt it would be good to just put some words down to document this past week as part of the overall journey.

I guess I'm adjusting to a new type of normal.  Don't get me wrong, this is not a normal I'm prepared to put up with for very long, but I've got to accept it for what it is right now.  Let me explain.  I'll be going about my daily routine - wake up, take meds, wake kids up, get them fed, dressed, lunches packed, out the door, dropped off at school, come home, eat something, rest, read, take some more meds, do whatever household activity I have the energy for, rest, pick up kids, make snacks, talk about their day, spend some quality time with them, rest some more, make dinner, eat, give myself a shot in the stomach, rest, get the kids to bed, spend some time with Ray, take more meds, go to bed.  And somewhere in the midst of all of this it will dawn on me; this is actually happening to me.  This is my life right now.  All the medications, all the hand-sanitizing and careful hugging, the bald head, the fatigue - this is my life.  It's not happening to someone else, it's happening to me.

I don't feel like I have a whole lot of control these days, which for someone with control issues is not the easiest place to be; but I guess the one thing I can control is what I do with all of this.  I can let it drag me down - that would be pretty easy from an emotional and physical standpoint.  Then I think about Maria.  No, not Julie Andrews in The Sound of Music, Maria the chemo nurse at Sloan Kettering.  This past Tuesday, after my first chemo nurse tried and failed twice to find a viable vein for my treatment, they called in Maria.

By this time I had tears in my eyes, not because the pain was so intense, but because the memory of my last treatment and the five different places where I was poked for good veins was just a little too fresh.  Enter Maria.  She could see I was unraveling.  She reassured me that she would find a good vein on her first try.  She wrapped my arms in hot packs and warm blankets.  She told me my job was to just relax.  In her soothing and confident manor she proceeded to get me hooked up, as promised on her first try, to my IV line.  She told me that whenever I come in for out-patient treatment, she will be the one to help me.  I felt hope.

Maria helped me see that I have another option, surrender and trust.  I realize my point was that I could still control something and that is still my point.  I can control who I give all of this up to.  I can give up my control to the chemo that is killing the disease and wreaking havoc on my body.  I can give up control to each new situation I find myself in.  Or I can give up control to my Savior, Jesus Christ, who is well acquainted with sorrows and bears more than just a few needle marks on his body.  I choose to trust him.  I choose to let him carry me through this and to continue to provide Marias for me along the way.  I choose to let Him use this somehow for His greater purposes.  I choose to invite you along for the ride.

Take back a little control - and laugh while doing it

Last night, in the company of family and friends (and a good amount of chocolate), I got to take back a little bit of control of what's happening to my body.  My hair started coming out in earnest at the beginning of the week and by Thursday I was left feeling too patchy on top to go out without a scarf covering it up.  I had already decided ahead of time that when it became apparent that my hair was not sticking around it would be time for a hair-cutting party.

I invited friends and family to join me in taking it all off - and yes, I meant to phrase it that way.  As 7pm approached last night I wasn't sure what to expect.  Because of short-notice and sniffles, several of my close friends and family members could not make it.  I started to feel like maybe not many people would bother to come and that perhaps I had made a mistake  (especially considering the fact that I didn't even have a good pair of scissors or a trimmer).  And so I just told God how I felt about it.  Within minutes Melissa called to say she was on her way and bringing an entire hair-cutting kit with her.  I told her how perfect her timing was.

Then my party guests started arriving.  They came with hats & scarves - as requested by me for a group photo; and they came with gifts, for which I was totally unprepared.  Andrea read a list of the top ten reasons why being bald is hot and that got the laughs started.  At times I caught a few friends getting a little watery eyed during the night, but for the most part it was a riot.  Once I took off my scarf, which was a little like exposing myself, I knew I could do this.

My mother started the cutting by giving me bangs, which if you knew me as a child you might be able to picture the end result.  My sons each took turns giving my hair a cut as did everyone else, and my husband helped buzz my hair down to some sort of G.I. Jane status.  I could see my reflection in the living room tv and although the first few cuts were the hardest, the rest took on a sort of fun feel.  When I finally saw the end result I could honestly smile, because it was much easier to see myself this way then it had been to see myself with clumps of hair missing.  I was also incredibly relieved to find out I have a nicely shaped head - no unsightly lumps or moles (you've gotta find something to be happy about here).

Several of the party goers have checked in with me today to see if the laughs of last night gave way to tears today.  I could honestly tell them that I'm still smiling.  When I see my shaved head in the mirror I see a warrior.  I see a chemo-kicking soldier who has been called up to active duty and is tapping into reserves of strength that I did not know I have.  I do, however, know where my strength comes from.  My strength comes from the Lord, the Maker of heaven and earth.  And He, like my husband, still thinks I am beautiful.

Find joy in the midst of the challenge

Today I lost a large majority of what was left of my hair.  Well, I didn't lose it - it was all over my bathtub floor and my towel.  I knew as I washed my hair that this would probably be for one of the last times.  It didn't make it any easier.  So I cried a little and then I declared to myself, "This is the day that the Lord has made.  I will rejoice and be glad in it;" and then I cried some more.  I'm such a girl.

I warned my boys that today mommy would be wearing a scarf on my head as I walked them to school.  We talked about the fact that their friends might ask them why I have a scarf on.  Micah said he thought I might look like a genie.  We laughed and thought that was a pretty fun way of looking at it.  Jon just said that he would tell his friends my medicine makes me bald.  Nothing like childlike simplicity.

I donned my very lovely scarf that matched my track suit quite nicely, if I do say so myself.  Told myself that I could do this and walked out the door with the boys.  I had already told my friend Andrea, who called to check on me, that I might need some emotional support.  She was at the ready.  I took the plunge, I went out in public with what felt like a neon sign flashing - cancer patient; and I survived.  I posted my scarf-wearing, smiling picture on Facebook and am ready to take the next step with a haircutting party tomorrow night.  I want to cut it off while there is still some to cut and end the torture of the morning shower/hair drama.  Plus Jon even commented that my hair was in his sneakers this morning, so it's time for my hair to get off my head and off all of the other surfaces in my house.  I'm embracing bald.  I am holding onto joy.  I am trusting God to be the glory and the lifter of my head as He has promised in His word.

Read a book

Now I'm not just talking about any book here.  Those of you that know me, know that I love a good read; but the book I'm reading today is rather special.  It's a picture book called Nowhere Hair.  I just finished reading it with my 5-year-old.

It's started, the thing I thought I was prepared for but now realize I am not quite ready to face...my hair is falling out.  I noticed it after my shower this morning as I held out my hands and they were covered in my hair.  Each time I run my hands through my hair, they come out covered in strands.  Now I'm not saying I don't shed normally, but this goes beyond the norm.  My hair is definitely coming out.  Jonathan, my youngest (who is also very attached to my hair and has been since infancy) asked me what I was holding in my hands this afternoon.  He wanted to know if I had spiderweb on my hands.  When I showed him that it was my hair he said, "Your hair is starting to come off?"  We had warned the kids ahead of time that this might happen.

So, with that question being raised I asked him if he would like to read a fun book with me (thank you Melissa Stewart of Sloan Kettering) about what might happen to mommy's hair.  He said, "yes."

We snuggled up on the couch - when my 7-year-old saw the title he decided he would rather not look at this book right now.  That's okay, we'll deal with it in his own time.  Jonathan and I read the book, talked about what kind of things mommy might wear on her head and generally just got a little silly.  Silly is necessary when facing this topic.

This is a new kind of waiting.  Waiting to see when I will need to start wearing scarves and make the final payment on my wig.  Waiting to see if I can pull off bald with aplomb.  I'm thinking I'll need some great earrings and a cheery shade of lipstick to make this work.  And a husband who has already, lovingly, asked if he can make a few Kojak jokes.  I told him yes, after all, he's waiting too.

Enjoy the good days

I have had the unexpected blessing of two good days in a row after my first out-patient treatment.  It has been amazing to just have the energy to make it through an entire day.  After the really rough week following in-patient chemo I was expecting another difficult week, but this has been a pleasant surprise.

That being said, I am using this waiting time to enjoy these good days.  I know that they won't all be as smooth as these have been, so I'm trying to treasure these and hold onto the feeling of them to help me get through next week's return to the 12-hour methotrexate drip.

Today I had the pleasure of taking my boys to their first day of school - Micah is in 2nd grade and Jon is in Kindergarten.  I wasn't worn out just from walking them to the end of the block and back.  I had the energy to make necessary phone calls, visit with a friend, and I even baked, what has now become a tradition in our family, first day of school cake.

I am thankful to my doctors and nurses for the new anti-nausea drugs and to my friends and family for the prayers and support that have made this good week possible.  Now I'm going to enjoy some time of relaxing with my hubby while my kids sleep.  That's what I'll do while I'm waiting on my good day.

Why not go shopping?

The past week has been a bit of a bummer (understatement), and I've got more of the same to look forward to with round 2 of chemo starting tomorrow so what should I do today...the answer is quite clear: GO SHOPPING!

I cannot change the fact that tomorrow two more poisonous chemicals will get pumped into my veins and the aftermath sucks, but I can change my outfit.  So today, I'll hit up the mall and get some new yoga pants (let's face it those things are comfortable), pajamas (because I seem to be living in them), and the all-important electric razor (there are certain things I refuse to let go just because I feel like crap).

I'm not putting all of my hope in retail-therapy, but a little shopping escape every now and again just makes you feel like a normal woman and right now I really would like to feel normal, even if it is only for an hour or two.

So while the rest of you prep for your cook-outs and enjoy this extra day off from work, I am going to push chemo to the back of my mind (which is practically an olympic sport in terms of difficulty) and set about finding a couple of pairs of track pants that are slimming, comfortable, and not a complete snooze-fest.  I don't want to be the ugly-duckling at the chemo suite tomorrow.

Do not succumb

I write this today for myself, if you're reading and get something out of it, then that's a bonus.  I need to do this for me.  I need to stay sane and I need to get some thoughts out and begin to let God breathe on places that feel crushed right now.

My first round of chemo was Tuesday, August 30th.  I had been told by my oncologist that during and after my in-patient treatment I would feel pretty good.  Apparently my oncologist has never, EVER, been through chemo.  I had an allergic reaction to my first 1-hour drip so I had to get benadryl pushed directly into my IV port.  Talk about feeling a little woozy, but it was better than the alternative.  So now, just to be safe, I'll be getting an IV of benadryl everytime I get a dose of etoposide.  That was the easy part.  Half and hour into my 12-hour methotrexate drip the nausea kicked in.  I had been given an anti-nausea med, but that was not cutting it.  I was able to sleep through most of the night but the nausea didn't leave.  The next morning I could only manage to eat a handful of dry cheerios and drink some water.  I've been on different anti-nausea meds since, but it doesn't totally get rid of the feeling.

Like I said, this blog is for me, so if you feel like you're reading a whine-fest, I just need to get this all out.  I know there are plenty of people going through more difficult trials than this, but right now this trial is what's blocking my view.

My energy feels like it has slowly been drained out of me.  I'm not sleeping for more than 2-hours at a time at night, simple tasks (like making pancakes for my boys yesterday) completely drain me.  I didn't think it would be like this so soon.  I try not to focus on how much worse it is going to get.  I try.

I have told my mother and my husband that I am not the kind of woman that was cut out to go through something like this.  They reassure me that I can do this - but I don't want to do this.  I want to hide.  I want to give up and it's only the beginning.

I think it was the mouth/throat sores that did me in.  I woke up with them yesterday.  It feels like my throat is swollen and constantly raw.  My body is clearly struggling to process the effects of chemo and likewise, so are my emotions.  Discouragement is overwhelming, despair is waiting to pull me under, but I cannot let them take me captive.  I have 2 children watching mommy.  They will learn just how much mommy means it when she says that we can trust God.  That He wants what's best for us.

So God, you have to come through for me.  I know you will, not because I make petulant demands, stomp my feet or threaten to hold my breath unless you do; but because you are God and you have never forsaken me yet.  Please show me how to walk this road because I just want to jump off this path and run screaming in the opposite direction.  I am so ill-equipped so I'm trusting that you have packed my bags for me because otherwise I will not make it to the other side of this journey.  You have to get me there, in one piece, safe and sound.  And you have to do that for my family as well.  I'm trusting you with the most precious things I have, my children, my husband, and my body.  Speak gently to me because I am barely hanging on.