Lessons I've learned while waiting

For those of you following my blog that don't already know - I have reached the end of my chemo treatments, which have been successful (and incredibly challenging), and am now on the road to recovery.  ******Pause for a celebratory dance********

So I thought I'd take a minute to reflect on some of the lessons I have learned on this journey through the battlefield of cancer.

1. I am not the world's most disciplined blogger.  I set out to at least chronicle my journey on a weekly basis.  Oh well, sporadic as it was, the blog provided a means for me to vent, mull over, and digest what was happening to me during one of the most trying periods of my adult years and it kept me connected to others so I didn't totally shut down emotionally.

2. I did not survive cancer because I am strong or have incredible faith - I survived cancer because God gave me strength and because He is faithful.  There were plenty of times when I just did not have it in me to believe that I would ever be cured of this disease or that I would even be able to physically make it through one more treatment, but thankfully it wasn't about my belief level.  I know that there were so many people praying and believing for me.  I just had to rest in the knowledge that God was and is bigger than cancer and He had the situation under control.  The burden was not on my shoulders, but on His.

3. I am loved beyond belief.  My family, friends, neighbors, co-workers all poured out love in such amazing and humbling displays that I am still at a loss for words as to how to thank them properly.  I can only promise to try to do the same for anyone I know when they go through difficulties.

4. Surrender is not easy, or pleasant, but it is necessary.  I had to surrender in so many different ways - control of my kitchen (which if you know me may have been one of the hardest things I have ever done), control of my situation, control in general - but if I had tried to maintain control, especially of the unnecessary things that may have seemed important at the time, I would have just drained myself of the little energy I had.

I know I learned a lot more, but I'll reflect on those things as they come to me.  What I know right now is that I am grateful.  Grateful to be finished with chemo.  Grateful to have had such amazing support.  Grateful to be getting stronger each day and slowly reclaiming pieces of my life.  Grateful to be alive.

I saw this on a sign at my follow-up appointment at Sloan last week.  It was in a bathroom that I used each time I went for treatment, but it had never been there until this last time.

What Cancer Cannot Do

Cancer is so limited.
It cannot cripple love,
It cannot shatter hope,
It cannot corrode faith,
It cannot destroy peace,
It cannot kill friendship,
It cannot suppress memories,
It cannot silence courage,
It cannot steal eternal life,
It cannot conquer the Spirit.

I'd say that about sums up what I have learned.

Be thankful

I've fallen behind on my blogging, not because there hasn't been anything to write about, just because I didn't really feel inspired.  Well, this morning I am semi-inspired so I'll just work with that.

Quick health update: I have made it through 10 rounds of chemotherapy.  I was initially hoping to be finished after 12 rounds, but that will not be the case.  I have just 5 more rounds to go so I am in the home-stretch.  My body has been experiencing a more difficult time processing the toxic effects of  the treatments and I am really ready to rediscover what it feels like to feel like 36 again when this is all said and done.  I am looking forward to having energy, to being the full-time mom that I don't feel like most of the time right now.  I am also looking forward to a list of foods that I have determined I will eat in the month of December when my normal appetite returns.  This list includes such delicacies as: tea, scones & savories at one of my favorite tea houses; a crab pretzel from Bill Bateman's in Baltimore, my mom's crab & corn chowder, Outback cheesy fries & salad with tangy tomato dressing, Houlihan's chicken parm shared with my honey, and of course Christmas cookies made with my boys.  My mom said that my list may have to take me into January - we'll see.

So, what does any of this random prattle have to do with the title of this blog post?  Be patient people, it is a virtue after all.  (Chemo may have slowed me down but it has not robbed me of my sarcastic sense of humor).

An amazing gift that I have been given in the midst of all of the struggles with cancer treatment is the opportunity to be thankful.  Let me explain.  I am blessed by God to be surrounded by neighbors, family, a church family, and friends that have poured out love, support, encouragement, and prayers on me and my family.  There have been monetary donations, grocery store gift cards,  gas cards, help with my children, rides to my appointments, cards, encouraging texts & phone calls, flowers, care packages, home-made meals, and more expressions of compassion than I can begin to say thank-you for.  Each time someone blesses my family with the gift of compassion I am humbled to be the recipient of such love.  I am constantly reminded that God, my Heavenly Father, has taken the time to prompt each of these people who have blessed us to reach out and do so.  Because if we are honest with ourselves, it just isn't in our nature to take the time out of our incredibly busy lives to help someone else when we can always use help ourselves.  Who of you isn't going through something difficult right now?  It may not be cancer, but it may still be keeping you up at nights or eating away at you.  I challenge you, as my very good friend Melissa once did for me, in the midst of her pain she reached out to me in mine upon the suggestion of her husband that they should find a way to bless someone else.  She was mourning the loss of her mother, I was mourning the loss of another miscarried child.  She taught me a valuable lesson - don't wait to offer compassion until you are on the other side of your own hurt.  Offer it from right where you are.  I hope to do the same through this blog and through individual interactions I have been having during this journey and I look forward to exercising a new level of compassion in the future.

Thank you for taking the time to read this.  Thank you for any part you have played in walking with me through this journey.

Sing a song

This week's musings have been a little harder to put into words for me, but here goes.

Last week's in-patient treatment was one of the hardest to date.  I entered the hospital on Tuesday, October 11th, feeling pretty week and discouraged.  I had spent all of Monday in pain with one of the worst back-aches of my life and it left me feeling depleted.  I asked my husband, Ray, to take the day off and go into the city with me rather than having a friend take me.  I just needed him - and to his credit - he knew it and made me feel like I was the most important thing in his day.

Turns out it was a good thing he was with me.  We found out that I had a bacterial infection in my gut (just your run of the mill bacteria that had gotten out of hand) so I was moved to an isolation room and chemo was delayed.  I wasn't sure how many days I would have to be in the hospital, but I knew it was more days than I wanted to be there.  There were plenty of tears and I just felt defeated.  Frankly I am sick and tired of chemo.   I am tired of having my body rebel against it's intended purpose.  I am tired of weak muscles, nausea, sore bones, daily injections, multiple medications, and I am really tired of my bald head.

As I slept in the hospital that night, it came as no surprise to God how I was feeling.  And just as I have said, even when I may not always feel it, He is Faithful.  My friend, Michele, sent me a text at 2:12a.m.  She later told me that she had planned to text earlier but didn't want to wake me if I was sleeping, but just couldn't sleep until she sent the text.    It was a text of encouragement.  It contained these words from Isaiah 54:10, "Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken nor my covenant of peace be removed."  She also reminded me that I was not alone even though I was in isolation and that I was surrounded in prayer.  This text was a life-line.  So many have been thrown out to me just when I need them most in this journey.

I spent the next hour and half just knowing that God was very much with me and He had not forgotten where I was.  I stood against discouragement and defeat (well actually I was laying down, but you know what I mean) and invited the Lord to just fill my hospital room with His presence and peace.  So are you wondering yet when I'm tying in this whole singing title to my blog with what I'm actually writing?  Here's the connection.  After I read the text and talked things over with the Lord, I just felt like He put song after song in my heart to sing.  The first one came out in a very soft, cracked, tear-filled voice.  I could barely get through it.  I mean, praise is not an easy thing when you're in this place; but as I sang each song that came to my memory I began to feel such a tremendous release and peace.  It was when I began to sing an old hymn, "Blessed Assurance," that I really got the message of what God was doing for me.  Here are the words to the verse that meant the most to me:
"Perfect submission, all is at rest
I in my Savior am happy and blest
Watching and waiting, looking above
Filled with His goodness, lost in His love.

This is my story, this is my song
Praising my Savior all the day long.
This is my story, this is my song,
Praising my Savior all the day long."

I would not have chosen this as my story.  I would not have penned these words to be part of my song, but God, in His infinite wisdom, has entrusted me with this and I will sing it out for all to hear.  My voice may crack and the tears may flow down my face, but I will sing the song and share the story that He is writing as long as He gives me breath.

Realize nothing has been left to chance

This week has been a good one.  Other than some pain in my hips and legs (a result of my bone marrow production being forced into overdrive by my daily injections) I have been able to function at my new normal levels.  This means I've been able to get up each morning, get my kids ready for the day and off to school, then come home and rest with the occasional burst of energy required to make myself something to eat or finally put my kids dirty clothes in their hamper instead of the living room floor.

My HCG levels have dropped to 23 and will hopefully reach 5 by next week or very shortly thereafter.  Once they're at 5 then I'm down to my final 6 rounds of chemo.  My white blood cell count is up to 3.5 - still considered low but a heck of a lot better than the 0.5 I was at just 2 weeks ago.  My veins have actually improved over the last 2 rounds, which is only attributable to the power of prayer, because that just doesn't happen.  This leads me to the title for today's blog.  It was something I heard in a Beth Moore dvd series that I've been watching.  She stated that as a child of God we can be certain that nothing in our lives has been left to chance.  We may come through some incredibly difficult times but we can be assured that none of the rough things we have experienced will be wasted.  I can say that I agree whole-heartedly.

Now, whether you believe the way I believe or not, let me explain why I believe this.  This is not the first difficult journey I have made in my life.  In fact, when posed the question, what was the year that changed your life? I would have to answer 1990-1991.  That was the year I was 15 and my world turned upside down.  I don't mind sharing with anyone who reads this that it was the year I was raped by an acquaintance.  I was not held at gunpoint, I was not beaten, I was given a spiked drink, naive and scared.  I struggled and finally, wearily gave up as he took advantage of me.  The idea of "date rape" was a fairly new concept at that time and even though the man who did this to me was over the age of 21 and I was a minor, I did not seek legal recourse.  Sadly, my parents were out of  the country when all of this happened so I did not have them to lean on or to defend me.  For that's what it was at the time, defending my actions to prove I had not deserved what happened to me.  I share this story only to highlight that at the age of 15 I could not possibly see how any good could ever come out of this situation.  I did, however, have something in my heart prompt me to utter the prayer to God, "If you can ever bring something good out of this, then it will have been worth it."

I have seen God do just that over the last 21 years.  He has brought beauty out of the ashes.  He has used my  experience and His healing of my life to speak to several different girls that had gone through similar things.  He has given me the courage to be vulnerable and share things many of us try to keep hidden because shame has taken its toll; and in being vulnerable it has opened a door for others to walk through.  God redeemed what appeared to be an irredeemable event and has used it for not just my good, but the good of others.

I share this to say that just as a 15 year-old girl could not begin to see how God could use a potentially devastating experience for good; could not glimpse 21 years into the future; this 36 year-old woman has no idea just what God's plans are for the journey I am on now, but I know they are for my good and for the benefit of others.  I have come to know him as my Redeemer.  I trust Him with the situations that seem to be left to chance because He has proven time and again, that if I will allow Him to use my pain He will turn it into something far more beautiful than I could have ever imagined.  Just wait and see.

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.

Option #3: Prepare

I can liken how I'm feeling right now to how I felt when I went into pre-term labor with my second son, Jon.  At 32 weeks I started having contractions and I could tell I was going into labor.  The doctors said that the baby could come at any time.  We thought we had 8 weeks left to prepare.  I mean, we weren't altogether unprepared, we had just been counting on those last few weeks to get all of the details in place.

So, Tuesday when my oncologist said that I would need to start chemotherapy next Tuesday, August 30th, I found myself feeling a bit under-prepared.  It would seem rather odd that after waiting for this long that I would be caught off-guard by the idea of action and a possible end to all of this waiting, but here I am.  I have 5 days to get things in order at home, and the list of to-do's seems endless.

The biggest challenge will be talking to our children about what lies ahead for our family.  I've talked to a chaplain, a social worker, and friends for advice on how to put this into terms that my 7 and 5 year old can understand without feeling afraid.  Mostly I'll rely on God for the words when we need them.  If I feel confident that I can trust God as I go through this journey then I will also be confident that I can trust him with my children's emotions and well-being.

So, I will do my best to prepare and then my waiting will take on a new look.  I will be waiting in places I would choose not to enter - chemotherapy suites and hospital rooms.  I heard once that if I am waiting on results I will feel depleted of strength and weary, but if I wait on the Lord, He has promised to renew my strength; so I will not focus on my hcg levels reaching 0 and the 6 weeks of chemo that will continue after that.  I will choose to focus on my God and what He can accomplish during this time.

Option #2: Think, Ruminate, Ponder

I am reminded of a catchy little ditty sung by Steve and later Joe of Blue's Clues, "...You just sit down in your thinking chair and think, think, think."  Those of you with children that were one time Blue's Clues fans are no doubt humming along - for this I apologize.

When waiting, and all else fails you, think.  Think about what you are waiting for.  Think about what you will do when you are no longer waiting.  Think about whether it's better to wait some more or just get it over with.  There's a whole lotta thinkin' to do.

Today my thoughts have caught up with me.  This usually happens as blood tests and appointments draw near.  I go for my blood test tomorrow and then meet with my oncologist on Tuesday, where I will endure a whole other dimension of waiting - that will have to be blogged on later.

So today I am thinking, pondering, ruminating (add your own synonym here).  I'm not trying to run away from my thoughts because after this many years of waiting I know that these next few days it's just a given that I will be preoccupied with thoughts of lab results and potential outcomes.  I may plan a little, I'll probably be a little on-edge (although I've promised my incredibly patient husband that I will try my best not to take it out on those around me), and I'll be a little quieter than my usual chatty self.  Thinking does that to you.  It quiets you down.

 I will not, however, allow my thoughts of what the next few days and not-to-distant future holds drag me down into a pit of despair.  For I know that somewhere in the midst of this waiting, God is at work and on the other side of all of this I will have a better perspective on what His purpose has been.  That's one thought I don't trouble myself with...why?  I can't fathom the why, but I have complete confidence in the one who can.  I trust Him with my whys.  In fact, I'll add that to my things to think about today:  He is faithful and just like any loving parent (He is Father after all) He wants what's best for me.

Hey, I think I just discovered a clue.

Waiting option #1: stay busy

Alright, so I admit this isn't a long-term solution, but staying busy can really help when you are waiting.  Let's face it, when we're not busy we have time to think; and although time to think is a good thing, it isn't always welcome while you wait.

So, today I am:

• doing laundry
• prepping for a Pampered Chef show that I'm doing tonight (if I'm lucky there will be enough double chocolate mousse cups for me to have one too)
• keeping my children occupied so they will not resort to physical violence (they're 7 & 5 and summer break is going a little long)
• running to two different libraries to return items and check new ones out
• stopping at the grocery store to get the ingredients for my fruit salsa & cinnamon tortilla chips
• saying goodbye to my sis-in-law, bro-in-law & nephew before they head back to Michigan - bye Pam, Greg & Nick
• and filling the in-between time with some sort of house-cleaning related item

This is not what I do everyday while waiting.  There are other things I occupy my wait-time with, but if I were to blog it all now, what would keep you coming back?  What would keep me writing?  So today's recommendation remains, stay busy.

Just remembered the saying that "Idle hands are the devil's playground," well I've found it's more an "idle mind" that wreaks havoc with my day, but today busy hands are keeping me from a very slippery slide.

It's been 4 years

Warning: This initial blog contains a lot of medical jargon, but it's necessary to wade through it in order to understand my story.  So if you're diving into my blog for the first time, continue to take the plunge and I promise, you will come up from this "medical-ese" deep end shortly.

In 2007 my status as Lady in Waiting began.  After a miscarriage in July of that year and 2 subsequent positive pregnancy tests in October and December - neither of which resulted in a viable pregnancy - I was sent to my first specialist.  The gynecologic oncologist diagnosed me, at the time, with a case of Phantom HCG (human chorionic growth hormone).  It was thought that something in my blood was reacting with an agent in the pregnancy test serum to produce a false positive, thus indicating I was pregnant, when I, in fact, was not.  I was told that eventually this would just work its way out of my system and that I was free to have more babies (I already had 2 healthy sons).
In November of 2008, at my annual exam, I tested positive for pregnancy once again.  My ob/gyn and I both questioned whether I was really pregnant or if this was just the Phantom HCG acting up.  So, she tested my blood and sent me for a follow-up blood/urine test 48 hours later.  It turned out that the blood and urine both tested positive - a sign that it was no longer phantom hcg, but with my hormone levels not increasing at all in the 48 hours, we suspected this was not a pregnancy either.  All signs pointed to the more serious possibility of GTD (gestational trophoblastic disease).  GTD, as I have come to learn, takes place when gestational trophoblast cells, leftover from a pregnancy, remain in the body after childbirth, miscarriage or abortion.

So, back I went to the oncologist.  After a D&C, which resulted in the removal of a placental nodule - benign - it was determined that I had a very rare form of GTD.  So, low dose, single drug chemo began.  2 rounds of intra-muscular methotrexate and when that didn't work, 1 round of actinomycin-d.  After each round my HCG levels went up instead of down.  So, the specialist called a few more specialists.  After more tests, (have I mentioned yet that by now I was really tired of tests?  If only I knew this was just the tip of the testing iceberg.) I was advised to have a hysterectomy and then multi-agent chemo.

Are you still with me?  Because I'm tired of typing so you must be tired of reading.  Should we take a break and come back to this tomorrow?  I don't think I'll want to revisit all of this so I'm going to continue with my back-story vomit and you can decide whether or not you need a break.

Anyway, amazingly enough, my hysterectomy surgery was cancelled as I lay on the gurney ready to be wheeled into the O.R.  Interest piqued?  That's a whole lot of story to tell, and I still have a lot more story to go, so if you want details you'll have to wait for my book or the movie to be made based on my book, I'm hoping they'll go for a young Sandra Bullock type to play me.  Oh, I know, maybe Anne Hathaway.  I digress.

After my cancelled surgery the specialists conferred again and decided the best course of action was...to wait.  From May 2009 to December 2010 I went for regular blood tests and waited for my HCG levels to either go down to 0 or up to 1000.  The level hovered around 52 for a year, then began it's slow and steady climb.  In December of 2010, after one night of some of the most excruciating pain I've ever experienced and what I initially thought might be a miscarriage, I decided I needed a doctor to take a second look at my case.  I picked one of the conferring specialists, after my oncologist's rather dismissive response, and under his advisement, had a hysterectomy. I knew there was a possibility that the disease can move outside of the uterus, so I asked about the necessity of removing my uterus.   I was told there was a 90% chance that the surgery would take care of the problem.  90% sounded pretty good, but I had a feeling I was a 10% kind of girl.  Turns out I was right.

So, now I'm the medical freak that tests positive for pregnancy without a uterus.  I'm still awaiting my call from PT Barnum (and yes I realize he's dead but I figure he's got family that would still be interested in the eternally pregnant woman).  At the very lease someone should notify STAR magazine or The Enquirer.

March of 2011 marked the newest phase of waiting.  I'm now a patient at Memorial Sloan Kettering Cancer Care Center.  The GTD specialist told me my case is unique - I'm thinking that says a lot.  I've undergone a full battery of tests and scans - MRI, CT, & PET (my least favorite was the PET; being radioactive for the day does not rank high on my list of things to do).  The scans showed some "spots" of interest as well as a pituitary tumor - all of which are presently benign.  At my May appointment my doc said the "magic" number for my HCG levels is 500 and then I'll need to start aggressive chemo for 3 months.  Now, like many people who have heard my story you might be wondering why I would need to undergo chemo if I don't currently have cancer.  Good question.  I've asked it too.  Turns out GTD, when left untreated, will turn malignant and when it does it gets ugly quick.  So, that "magic" number is the best time to attack, before it gets out of hand.

At the first appointment in March my oncologist at Sloan told me that some patients actually feel relieved when it's time to start chemo.  I thought that was a rather ridiculous statement, but now I'm beginning to understand.  You just get tired of waiting.  It's been four years.  I've learned a lot about myself, about my body, about medicine, about my support system, and most importantly about God in this interminable waiting period.  With my HCG levels last registering 398 in mid-July and my next blood test a few days away, it would seem my time in the waiting room may be coming to an end, but while I'm here I thought it might be time to make a few notes on what to do while you're waiting.  Just in case you find yourself waiting anytime soon.

Congratulations if you made it through this post - you've earned your deep-end pin.