Do you trust Me? - June, 2007

When I went for my first dose of chemo in the infusion room, I wasn't exactly sure what to expect.  First, they talked to me.  They were going to start an I.V. for each round of chemo, as long as my veins cooperated.  They could only use my left arm, because after having lymph nodes removed from my right underarm, I can never again have a blood pressure cuff or a needle on my right arm.  They couldn't put in a permanent port, because I'd had a staph infection, and it could seed itself in the port, so the hope was that my veins would cooperate.  They were going to start an I.V., then they would inject a steroid before starting the first of three chemo medications.  They would finish with a bag of saline to clean the vein, because the chemo drugs were so caustic.  The first drug, in fact, which looked just like cherry Kool Aid, came in two large syringes.  The oncology nurse had to inject them into my I.V. little by little, because if we somehow came out of the vein, it would cause necrosis (death of every cell it touched).  The other two chemo drugs would be hung in I.V. bags.  I was warned of nausea, and had three different anti-nausea drugs at home.  I learned my hair would start falling out about fourteen days after chemo.  I could develop sores in my mouth, and Popsicles were recommended.  And then they explained to me about my neutrophil count.

The white blood cells fuel the immune system.  Within the white cells is a specific immune generating cell called the neutrophil.  And chemotherapy kills these cells.  I learned that 7-10 days after each infusion, my white count would dip, called the nadir.  So, seven days after each infusion, I would have my blood drawn to ensure that my white count was within an acceptable range.  The normal neutrophil count in a healthy person is 1500+.  If my neutrophil count dropped below 1000, I would be considered neutropenic. I was given seven shots, to inject over the next seven days at home, to stimulate my bone marrow to produce white cells, in the hopes of preventing neutropenia.   My oncology nurse assured me that she had seen people with a neutrophil count of zero, who didn't even know until their blood was drawn.  She had personally never seen anyone suffer any ill effects from neutropenia, so I shouldn't worry.  Then I was told to stay away from sick people (ha ha - I had two small children) and to notify my doctor immediately if I developed any symptoms of illness.

And so I had chemo.  It went fine, and I really felt nothing, initially.  My husband drove me there, and sat with me during my infusion, then we went to a restaurant for lunch after I finished (starting at 9 A.M. and lasting about five hours).  Then I went home and waited.

Finally, in the early evening it hit ... like a rock.  My stomach started to protest, and I regretted putting food in my mouth.  I took all the anti-nausea medication, which didn't exactly end the nausea, but kept it at bay, making it bearable somehow.  After that first round of chemo, I felt mighty sick, but never actually threw up, so I guess it accomplished its purpose.  I had chemo on Friday, and that evening I crawled into bed and stayed there for three days.  I couldn't read, I couldn't watch T.V., I simply lay on my side, and endured.  It was horrible, and hard to describe.  It wasn't exactly like the flu, or strep, or any other illness, but sort of like all of them at once.  It was as if my body was using every ounce of energy fighting the poison that was coursing through my veins, and there was simply none left to fuel any other activity.  I almost stopped thinking.  I was aware of the sheets, and how they felt against my skin.  I was aware of the breeze blowing through the open windows.  But my mind was like an empty room, with no thoughts at all.  I just lay there, waiting for the assault to end.

And it did.  I woke Monday morning feeling like the worst was over, except for having a sore throat.  I called my doctor's office, to let them know (as I'd been instructed), and tried to keep the sarcasm out of my answer when the nurse asked if I'd been 'exposed' to anything.  I just said, 'uh ... yeah.  I have two kids who are with other kids all the time - I've probably been 'exposed' to everything.'  So they started me on Cipromycin, a broad spectrum antibiotic and told me to watch my temperature.  If it hit 100.8, I was to call back.

Thursday, I started to feel truly ill.  I knew I was entering the nadir, but I didn't really understand what that meant for my body.  Around 7 P.M. Thursday evening, my temp hit 100.8, and I called the on-call nurse.  After consulting with the on-call oncologist, she said I had to come into the E.R.  They put me in the psychiatric room, with a closed door, no phone, no T.V., nothing I could use to attempt suicide.  This was the only room in the E.R. with an actual closing door, and I had to be separated from everyone because of my compromised immune system.  They ran tests and drew blood, and after a while, the doc told me they found no known pathogens, and it was 'extremely unlikely' my blood count would be low enough after one round of chemo to keep me.  I would most likely go home on oral antibiotics, which is where I started.

I, of course, believed him.  I shouldn't have believed him, but I did.  The moment he said 'extremely unlikely' I should have asked him to get my room ready.  And when he came in, a while later, with a sheepish look on his face, I pointed my finger at him and said, 'you SAID extremely unlikely.'  He was sorry, he couldn't believe how low my blood counts were, I was already sick and the diagnosis was neutropenic fever.  Not only did I have to be admitted to the hospital, I was under neutropenic restrictions - I couldn't have any fresh fruit or flowers in my room (because of the bacteria on all living things) and no visitors unless they had on masks, gloves, and gowns.  I didn't even feel that bad - my throat hurt and while at the E.R. a slight cough had started, but it wasn't so bad, so I lobbied him to let me go home.  No go - my neutrophil count was 40, and I had to stay.  (By 5 A.M., it dropped to 30, and I was so sick I felt like I might die, so I have to admit they did the right thing.)

I was checked into the medical floor at 1 A.M. Friday.  The nurse let me 'get settled' (code words for take off your clothes and put on a hideous gown, open to the back, please), and then she came in to review the drugs I was on to make sure her list was accurate.  When she started to read the names, the tears welled up in my eyes, and I totally lost it.  I couldn't hold back the emotion - right then I just felt so amazingly sorry for myself.  I put my hand up, palm facing her, and said, 'give me a minute of self-pity, and then I'll talk to you.'  She sat on the bed, said she understood - I'd been through an awful lot, and she put her arm around me while I cried out tears of frustration.  I shouldn't have had positive lymph nodes in the first place, I shouldn't have had a staph infection, I shouldn't have lost my implants, I shouldn't have been allergic to common antibiotics, and I shouldn't be here!  It was my fourth hospitalization in two months, I'd had three surgeries, and it was my second infection.  I felt abused.

When the nurse finished with me, and I was alone in my dark room (with the door closed because I was in medical isolation), I prayed - well .... some might have called it ranting, but I was directing it toward God, so it was prayer. Did He know what was going on?  Did He even care?  I had hundreds of people praying for me, did He happen to hear them?  I cried and went on until I was spent, then I tried to quiet my spirit.

And I asked God to forgive me because I knew I was behaving like a brat having a tantrum.  And I asked Him what He had for me, because I needed something from Him.  And I heard ... nothing.  Silence.  Please, God - I need something from You.  I don't think my faith is strong enough if You don't reassure me that You're going to fix this.  And I got ... nothing.  So I stilled myself, shut my eyes, pushed away the thoughts that were crowding my mind - and I waited.  I wasn't exactly in the 'right place' spiritually.  I was upset, and felt justified at being so.  But I believed if I was listening, He would speak.  And He did.  In the stillness of that dark room, I felt the quietest whisper in my heart, a gentle stirring in my mind.

Do you trust Me?

My eyes literally flew open and I said, 'what?!?'  (Thankfully, I was alone).  Do I trust You?  This was not at all what I was looking for.  But as this arrow hit the center of my heart, clearly pointing to the crux of the whole matter, I recognized the simple truth of my answer and all its ramifications.

No.  I don't trust You.  If I did, I wouldn't be having a fit because things weren't going as I planned.  If I trusted You, I would believe in your goodness and love, and I wouldn't be questioning Your actions.  I was reminded of Jesus with the woman at the well.  She asked a specific question, and Jesus ignored it, asking one of His own.  And in doing so, He hit the core of her problems, figuratively ripping a scab off a festering wound, so it could heal.  (This story is in John 4).  I, who had spoken through this entire ordeal of my faith, didn't trust my Father.  What a heartbreaking truth.  And I couldn't do it - I couldn't just force myself to start trusting, simply because I knew I was supposed to.

I told the Lord that I'd try.  I asked Him to help me - to show me what I needed to do to trust, because I wanted to but just didn't know how to get there.  And for the time being, I let it go, and mercifully - as I faced one of the worst days (physically speaking) of my entire cancer ordeal, I slept.

Something Called Faith - May, 2007

When I read back through my blog entries, I think, "Oh, my goodness, the poor girl."  For a split instant, it seems like I'm reading about someone else because I feel so distanced from it all.  I wonder how I was possibly strong enough to endure it all, and come out on the other side, intact.  And I am at a loss as to how someone with no faith in anything outside of themselves can possibly survive illness, death, or any other personal disaster, without bitterness taking root and eventually taking over their life.  It is my faith that brought me smoothly through, and not just faith, but an actual relational experience with God, my Father.

There were a few times during my cancer journey where I was very sick - so sick I couldn't get out of bed. During those times, the bubble of my world would slowly begin to constrict, shrinking as I felt worse.  As I lay in my bed, it seemed like my world ended at the walls of my house.  I couldn't concern myself with anything outside of my own family, but I could still feel connected to them as they went about their business in our home.  As my pain or nausea would intensify, my world would shrink to just my bedroom. I would become so focused on dealing with the horrible symptoms, that I no longer heard my children playing in the yard, or the phone ringing.  But if those I loved came into my room, into that bubble, we could still touch and connect.  My oldest daughter could sit on the bed and read with me (she, actually reading; I, holding an open book face down on my stomach as my eyes drifted shut). Or I could play a game in my bed with my little one - completely disregarding the rules because she was two, and I didn't have the energy to explain to her how to play.  Or my husband could lean with me against the pillows, holding my hand, saying nothing.

But then, when I was hospitalized, removed from the familiarities of home, my world would diminish until it ended at my own skin.  I remember lying in a hospital bed, eyes closed, in a fetal position, hearing people talk to me, or talk around me.  But I just lay there, hearing a response in my own head, but unable to make my mouth move to actually reply to them.  And in that moment, I would pull myself into the farthest corner of my mind, willing my bubble to shrink around me, insulating me from the physical agony.  This only happened two or three times - at my worst moments.  And inside that pinpoint of existence, I discovered something quite miraculous.  The God of the universe, Creator God - larger than all physical existence, fit into that tiny space.  I was not all alone - He and I were alone, together.

Recently on facebook, a man commented on a post and said this:  "a 'god' has nothing to do with cancer or any disease.  If 'god' is your strength?  Then so be it.  But for me and many others?  Breast and other cancer is in the hands of early detection... and the Dr's."  The fact that he feels this way is so sad to me.  God has everything to do with cancer and disease ... if ... you put your faith in Him, and ... if ... you have relationship with Him.  He is not the author of disease - please don't get me wrong.  But He is there.  There is no where that God isn't.  I came to the end of myself, my very darkest moment, where my entire bubble was filled with pain, and infection, and cancer, and God was in it, wrapped around it, completely in control of it, having everything to do with it.   His Word says, "Where can I go from Thy Spirit?  Or where can I flee from Thy presence?  If I ascend to heaven, Thou art there; if I make my bed in Sheol (the place of the dead), behold, Thou art there.  If I take the wings of the dawn, if I dwell in the remotest part of the sea, even there Thy hand will lead me, and Thy right hand will lay hold of me."

God is there - in the most awful circumstance, if we will only see Him.  He was there when I came out of surgery, having lost one of my implants to staph infection, and had an allergic reaction in the recovery room to the antibiotic in my I.V.  He was there when I was sent home, and woke up one morning with my neck, chest and shoulders covered in hives - having an allergic reaction to antibiotic number two.  My doctor told me only 2-8% of people who are allergic to one family of antibiotics, will be allergic to another family.  And since I was already allergic to penicillin, I was now allergic to three families of antibiotics, which rarely happens.

God was there when my oncologist tried to explain to me how mind-boggling my pathology report was to all the doctors who'd seen it.  Normally, breast cancer attains some size (roughly two centimeters in diameter) before it 'learns' to spread.  This takes time.  A woman can have a tumor growing for years even, and have lymph nodes that are free of cancer.  In my case, the breast tissue removed during my cancer surgery had no infiltrating cancer cells in it.  All the infiltrating cells, and a microscopically small amount at that, were removed during my breast biopsy four weeks earlier.  My cancer should have been Stage 0; it was detected at the earliest possible moment.  Yet I had an 8 mm tumor deposit in my sentinel lymph node.

In my naivety, I asked if maybe the cancer started in my lymph node, and was just spreading into the breast.  Uhhh... No.  Not possible.  Three different pathologists had reviewed my slides from the O.R. because the results were so baffling.  The Chief of Pathology had reviewed my slides to be sure no mistake was being made.  They were sure of their results, bizarre as they were.  I had no infiltrating cells remaining in the breast (only DCIS cells, which I explain in an earlier post), but I had infiltrating cells in my lymph nodes.  In my 'cancer innocence' I still didn't get what this meant, so my doctor spelled it out for me.  My cancer was moving like a brush fire, and I needed to start chemo without delay.

God was with me there.  Instead of fear, I felt an absolute certainty that He had saved my life.  If I had waited to go to my doctor until I myself had discovered my breast lump, it might have been too late.

He was with me when, a few days later, I noticed a red patch on my right breast and chose to have the second implant removed instead of risking an infection during chemo.  Although it was not infected, the wound cavity was filled with fluid, called a seroma - a breeding ground for infection.  And He was with me when I finally made it to the infusion room, for my first round of chemo.  Even after the amazingly bumpy road I had traveled thus far, I felt only peace and optimism.  The nurse took my blood pressure and started to laugh.  I had the lowest blood pressure she had ever taken in the infusion room in eight years as an oncology nurse (119/72 for anyone interested).  She told me a 'normal' pressure for them was 150/90, because patients facing chemo are scared, which raises the blood pressure.  So I simply told her the truth.  "I'm not afraid.  Should I be?"  No, no, no - it was great that I didn't feel scared.  A good attitude will go a long way towards making you well, she told me.  But it wasn't a good attitude.  It was something called faith.

God's Purpose - Apr, 2007

Well, I finally, somehow, got my sister's attention, and we made it downstairs to the couch.  I called my plastic surgeon's office, and told them what I was feeling.  The nurse asked me if the side that was hurting was red.

Now, I need to explain something.  I had been wearing  a cotton, tank top camisole 24 hours a day for 30 days.  I was sleeping in one, and when I would change it for a clean one, I would pull it over my head and put the new one on without looking down.  With the material against my skin, I felt 'held together', which is hard to explain, but I simply felt better with it on.  So, I hadn't actually looked at my chest for days.

When the nurse asked me how my left side looked, I simply pulled the top of my camisole forward, and looked.  The sides looked the same to me, so I told her I didn't see any red.  She asked if I was swollen, and I said it didn't look like it.  She asked if I had a fever, and I said I didn't.  But, because of my other symptoms, she made an appointment for me to see my regular (primary care) doctor immediately.

My sister took me to the office, and I couldn't even hold myself up, so she got a wheelchair.  It turned out that some mistake had been made, and my appointment wasn't in the book until the next day.  My doctor wasn't even in the building, so they squeezed me in with a physician's assistant who was available.  She ordered an x-ray before I came up to the examining room.  I was wheeled back to radiology, and then asked to take off my shirt and put on a gown (open to the back, please).  Why is this?  I exchanged a cotton shirt, for a cotton gown.  Who knows - but I did what they asked.  In the little changing room, there was a mirror on the wall the size of my refrigerator (at least), and the purpose for this totally escapes me.  Why do I need an enormous mirror in front of which I'm supposed to disrobe?  The question was in my mind, and the answer never materialized; however, I faced this mirror as I took my shirt off.  And I sat transfixed.  The left side of my chest was noticeably bigger than the right, and there was an area as big as my open hand that was a bright, fire-engine red - an angry, burning, ugly thing.  I touched it lightly with my hand, and it was very hot.

When I finally saw the P.A., she looked at my chest and said I clearly had an infection, either staph or strep - it was impossible to tell.  Every centimeter of my body hurt, even my pinkie toes; I was extremely nauseated; I was so dizzy, I couldn't sit up; and I had finally developed a fever.  All this was a concern, because these are symptoms of septicemia (blood poisoning caused by the bacteria) which is no picnic and must be treated.  She took a Sharpie marker, and outlined the red skin with a dotted line.  I asked about the x-ray, and she said because of the proximity of the infection to my heart, they needed to take a look.  Thankfully, my heart was unaffected.  But, the fact that she ordered the x-ray before she saw me made me realize that they assumed I had an infection from the moment I called, whereas I was totally clueless to what was wrong until I stood in front of that mirror and saw the infection's monstrous calling card staring me in the face.  And even then, because the wound itself looked completely normal, even healed, I only knew something was horribly wrong, but not necessarily what.  The word infection never entered my head, until the P.A. said it.

I was sent home with oral antibiotics, and the instruction that if the red traveled outside the dotted line, I was to waste no time getting to the emergency room.  An appointment was made with my surgeon for one o'clock the next afternoon, and I went home.

Even after just one dose of antibiotic, I felt better (like I might live).  I stayed in bed, but the fact that I could feel an improvement gave me hope.  I slept well, and at six the next morning, I got up and went to the bathroom mirror, lifting my shirt.  The red was completely contained inside the black line.  It may have been my imagination, but it seemed slightly paler in color.  It was a Tuesday, and my children, who are homeschooled, had places to go.  My oldest went to her homeschool enrichment group, and my youngest went to MOPS (Mothers of Pre-Schoolers) with a friend of mine.  My husband was at work, and I was feeling okay, so my sister went to get her workout at Curves.  I was alone in the house, and, not feeling like doing much, I sat mindlessly in front of the T.V.

Around 10:30, everything changed.  I took a breath, and had a sharp, stabbing pain on my left side.  It was sudden - the hundred breaths before that moment were pain-free.  Then, in that breath, sharp pain shot across my left side, and again in the next breath, and the next.  With a sinking feeling, I ran to the bathroom and lifted my shirt.  In the mirror, I saw two angry red fingers, wrapping under my arm and toward my back.  About two inches of red was outside the black line.  I immediately called my surgeon's office, and told the nurse who answered what was happening.  And then I innocently said, "I have an appointment at 1 o'clock anyway. Should I just come to that?"

She asked if I had someone to watch my children, which I did.  She asked if I had someone to bring me in.  My parents were five minutes away, so I said yes.  Then she said, "LaRae - I don't want you to panic, but I need you to get here as fast as you possibly can.  Can you be here in under 1/2 hour?"  I said yes, then she told me to bring my toothbrush, because my doctor would probably admit me.

What??  Admit me to the hospital?  This is NOT what I wanted to be happening.  The tension and urgency in her voice hit me like a slap, and although I felt calm and clear headed, I began to shake - violently.  My friend arrived a few moments later, with my littlest and lunch, and I know I gave her a scare.  Here was her very calm, level friend, shaking like I was having a seizure.  I was feeling worse each second, dizziness beginning to creep up on me.  I sat on the bottom step, like a lump of jell-o, until my dad got there to take me to the doctor.  All this while, my little girl was looking at me, wide-eyed, and I kept saying, "Mommy is okay, Mommy is okay."

Well, I was admitted to the hospital, and started on I.V. antibiotics.  My surgeon had to take me back into surgery, to open the wound and flush it with antibiotics.  He told me he was optimistic that he could clean out the wound and around the implant, and I would be able to keep it and be okay.  He also assured me I would feel much better after surgery.  When I woke up, I put my hand to my chest.  Flat.  The implant was gone.  I shut my eyes and said, "No...."  I had that disappointed, I can't believe this is happening, feeling.  The infection, which they determined was staph, was too far gone to save the implant.  Only about 10% of patients develop an infection after surgery, and my doctor hadn't had to remove an implant for over three years.  So I was in a very small group (removing the implant), which was already in a small group (getting the infection), which was already in a small group (having the cancer to begin with).  It seemed I had taken a wrong turn somewhere, and every complication that could arise, did.  But then my doctor talked to me in my room.  He laid his hand on my arm and said how fortunate it was that I hadn't started chemo yet.  This was Wednesday, and I was scheduled for my first infusion on Friday.  He told me that if the infection hadn't surfaced for two more days, I would certainly be in ICU, fighting for my life, because of how profoundly chemo affects the immune system.  He let me know this little, bitty bacteria could have killed me, and it was a very good thing everything happened when it did.

All of this says something about God.  I could have felt like God was letting me down.  I was thankful that I hadn't had chemo yet, but why did I have to get the stupid infection at all?  (I tend to say 'stupid' when my attitude is in the pits, and this all felt very, very stupid.)  We, as people, tend to think that God should do our bidding, answering our prayers exactly the way we want them answered, and if He doesn't - well, then maybe we don't want to believe in Him after all.  But if I learned anything during my walk through cancer, it was this - God is sovereign.  He is not in subjugation to me, and I am not in control.  He is.  Everything that comes to me, comes from Him.  I am NOT saying that God made me sick - absolutely not.  But if I truly believe that He is sovereign, then I must believe that anything that comes to me, comes through Him first, and through the shed blood of Christ, and all Jesus did on that cross - including nailing my infirmities onto it.  And if it comes through Him, then essentially it comes from Him.  This gives me peace, because anything that comes from Him, comes with great purpose.  And, anything that comes from Him, can be trusted.

Apparently, He trusted me enough to let me handle something hard.  And although the path has been difficult to walk, grueling at times, the view from where I stand is good.  From here, I can see, at least partially, His purpose in handing this to me.  I have seen my testimony touch others, and I have witnessed the core of my being become stronger and more compassionate.  He has done as He promises in His Word - He has accomplished a good purpose, even from ugly circumstances. (Romans 8:28)

Death Knocking - Apr, 2007

After my cancer surgery, I slowly adjusted to my new self.  At first, I couldn't lift my arms, and I had to do exercises each day to increase my range of motion.  The right side, because of lymph node removal, felt very tight and sore, but I did my work so that my range of motion would be as large as possible.  My wounds were healing, and my drains were eventually pulled (a yucky experience, but such a relief to have them gone).  I had to wait until everything was completely healed before I could start chemo, but in the meanwhile, I had even had saline added to my tissue expanders which gradually stretch the skin in preparation for permanent implants.

When I went in to have the saline injected, through a port under each arm, my plastic surgeon noticed that I had a very small spot on the wound on the left side that hadn't completely closed.  He looked at it very carefully, determined that it was superficial (meaning the deeper layers of the wound had healed), coated it with antibiotic ointment, and told me to keep it very clean.  Then, because of that slight opening, he only filled each side with 50 cc's of saline, instead of the normal amount of 100 cc's.

I was in a pretty good place at this point.  I hadn't started chemo yet, so I didn't know what was waiting for me (ignorance is bliss, or something like it).  I was fairly happy with my reconstruction so far, feeling fairly normal.  And I felt peace.  I had a few people tell me to be prepared for swinging emotions, that I would feel angry, that I would have moments when I needed to rage, and to cry.  But none of that happened.  After my 'break down' (or whatever it was) when I found out my lymph node biopsy was positive, I hadn't shed a tear.  I felt positive, and strong.  I can't explain that, except to say that I believe God, through the prayers of others and His gift of faith to me, simply wrapped His Holy Spirit around me and bouyed me up.    I had many people comment that I was so calm, was so strong, that they wouldn't deal with this situation as well.  All I know is, I had two children who needed to see that Mommy was okay, and God made me stronger than I was.

A day shy of one month after my surgery, on April 15, a Sunday, my husband took me 'out'.  We went to Target - okay, not a date exactly, but my first real excursion.  I'd been to church that morning, I was feeling good, my energy level was okay.  So, we dropped our kids at my parents house, and went shopping.  We slowly pushed the cart around the store, buying a few things, and then we sat at Starbucks and drank coffee.  Sitting there, a strange feeling came over me.  I said, "something's not right, I feel off."  It was that fast.  I felt fine, then I didn't.  I tried to explain to him what I was feeling.  I was experiencing a very sharp pain on my left side when I inhaled.  I asked if he could think of any metal in my implant that could be poking me.  The answer was no.  He reminded me that the implant was just a silicone balloon, with rounded edges, nothing sharp.  He asked if I felt sick, and I said no.  I just felt wrong - I couldn't even put it into words at the time, but it was as if the world was pulling away from me, and I was shrinking.  My thoughts were becoming indistinct, I couldn't hold onto a thought and focus on it.  It was like a fog was settling around me.

We went back to my parents', and because all my sisters were at the house, they asked us to stay and visit.  I told them I wasn't feeling right, and needed to go home.  Later in the afternoon, my husband went to work (one of his overnight shifts) and my sister from Michigan came home from my folks' to be with me.  We put the little one to bed, and I baked cookies (notice I didn't say made).  I scooped dough from a bucket and put it on a cookie sheet.  Then I did something that I thought for the rest of the night was a critical error.  I pinched off a little piece of dough and put it in my mouth.  This is something I'm sure lots of people do, in spite of the dire warnings about raw eggs, etc.  My sister, my older daughter, and I sat down to watch 'The Miracle Worker', and within half-an-hour, I was feeling queazy.  I was certain it was the raw dough.  And then my energy level crashed.  I didn't even have what I needed to wash the one pan dirtied baking the cookies.  Suddenly, the biggest accomplishment of my life was going to be climbing the stairs and getting into my bed.

My sister encouraged me to call my doctor.  And tell them what?  I'd made myself sick eating raw cookie dough?  I don't think so.  In addition to that, it was Sunday night, and my only recourse would be going to the E.R., which I really didn't want to do.  So I crawled upstairs and went to bed.

The next morning I woke up at 6.  My husband was still at work, so I was alone in my room, with my littlest girl in her crib.  I was so violently nauseated, I was afraid I might vomit on the floor.  "O God, help me make it to the bathroom."  This was my prayer, and in my mind, I was jumping out of bed and racing to the bathroom.  But it didn't happen.  My body didn't move.  I was so ill.  When I realized I could hardly even move, my prayer changed to, "O God, help me get to the phone."  Something was drastically, horribly wrong.  My body hurt, I was sick to my stomach, I had terrible pain on my left side when I breathed, and I couldn't even sit up.  I focused all my energy on putting my hands under my head, and pushing myself up.  After a tremendous effort, I only stayed up about two seconds before I crumpled back to the bed.  I tried calling my sister, but I knew she couldn't hear me.  I tried, and failed, several more times to sit up.  Finally, I let gravity help me, and I rolled off the bed and dropped to the floor.  I began to crawl to the top of the stairs, where it was more likely that my sister, who was sleeping downstairs, could hear me.

Now, I never thought, through any of this, that I would die.  I knew God had me in His hand, I had His promise (see the post Are You There God, it's Me, LaRae), I knew He had a purpose, I believed I still had a calling on my life.  I knew I would survive whatever was happening to me.   But the thought was there -  This is how people feel before they die.  Although I had no intention of answering, this was Death knocking.  And my prayer changed again, to the shortest prayer any of us ever pray - O God, help me, help me, help me......help.

Coming Home - Mar, 2007

Coming home from cancer surgery, I felt two things. The first was an extreme thankfulness for drugs. The other, was a fear that if I moved too quickly, I might yank something loose that was supposed to be sewn together; so, I moved very, very carefully.

Shortly after my cancer treatment was over, my daughter and I (whom I homeschool), studied the Presidents, and we chose one - John Adams - to study in depth. We learned that his daughter, in the early 1800's, had a mastectomy without anaesthesia. She wore her Sunday best, was put in a spare room with her arms and legs tied to the chair she sat in, bit down on a stick (after a dose of laudanum) and had a doctor remove her breast and sew the wound closed with instruments that had not been sterilized. The poor girl survived the surgery, avoided infection, but then died of her cancer because they had waited too long.

As strange as it was to come home with body parts missing, and in spite of the pain I experienced, I really did try to keep my perspective. Would I choose this surgery? No, but at least I had anaesthesia and Percocet to relieve the physical pain of it. Thank God I live in the age of modern medicine, and for narcotic pain meds, which I really view as miracle drugs. And I might not have my breasts, but at least they caught my cancer in time. And I might be facing a brutal plan of treatment, but at least I am alive. These were the things going through my mind. I was alive, and my goal was to stay that way.

I came home from my cancer surgery to two young children, ages eight and two. My two-year-old was still in her crib, and I would not be able to lift her for six to eight weeks. I also had three drains sewn into my wounds, one in my right underarm area where lymph nodes had been removed, and one at each mastectomy site. The drains were tubes coming out of my body, with bulbs on the ends that could be squeezed and then closed, creating a vacuum that gently pulled blood and fluid from the wounds. As these bulbs filled up, they would periodically have to be emptied, and the contents measured, and those measurements recorded, to ensure that I was bleeding an appropriate amount. Although I could empty my drains by myself, it was easier to have someone help me. During this time, my husband was working overnight twice a week, and I couldn't be alone because I wouldn't be able to lift my baby from the crib if she needed me. So my neighbor and dear friend stayed on my couch for five different nights in those first weeks, 'just in case'. I am so thankful for her. And, she is an R.N., so she wasn't grossed out helping me with my drains, which was a bonus. The other nights, my husband was my helper, and in the daytime, my parents. Then, my sister came from Michigan for three weeks, and all the while bouquet after bouquet of flowers came, until my home resembled a florist's. I received cards, and care packages, and meals, some from people I had never even met.

I was surrounded by love, encouragement, caring and sympathy. People's prayers, kind words, and practical support bouyed me up, and helped me walk a very difficult path. Nothing anyone did lessened my physical pain, nor did anything lessen my struggle; but, somehow, the support of friends and strangers lessened my burden. It made my journey bearable. I truly don't know how anyone faces this disease alone, and I thank God that He surrounded me with those all important others who make life what it is - joyful, relational, rich and fulfilling.

Cancer Doesn't Play by Any Rules

March 16, 2007. The day of my cancer surgery. The first step in a grueling journey.

We (my husband and I) had to be at the hospital at some inhumane hour - if I remember right, it was 5:30 A.M.. This was because the doctor was planning a sentinel node biopsy to check my lymph nodes for cancer, and the lead time for this procedure was about two hours.

Lymph nodes form a chain, like little beads on a string. About 90% of the breast's lymph fluid drains to lymph nodes in the underarm area. The first lymph node the fluid reaches is called the sentinel node, and doctors have found that if there is no cancer in that first node, then the lymph nodes will be cancer free. Hence the 'sentinel node biopsy'. About two hours before the surgery I was injected, with three shots around the nipple, with radioactive isotopes. Then we waited for these to drain through the lymphatic system into the underarm area. Before the surgery, I was injected with blue dye, which would color the lymph nodes blue. The doctor found the sentinel lymph node using a Geiger counter (tick, tick, tick) and where the ticking was the loudest, he cut, and looked for the blue node. Really a swift little procedure, if one can get over the fact that the stuff they put in my body had to be carried in a lead box. Hmmm...

I have very clear snapshot memories of that day. After being injected with the isotopes, I went back to pre-op to wait, and since I'd been up since before dawn, I fell asleep. When my surgeon came in to talk with me, and I jerked awake, he said, "Were you sleeping?" I admitted I had dozed off and he said, "People don't sleep in here." Pre-op was a very noisy place, and thinking this is what he meant, I said something about being able to block out the chaos. But I had misunderstood him. He meant that people didn't sleep before cancer surgery because they were afraid. And my clear memory from that moment was that I was totally unafraid. I was resigned to do what must be done, I wanted the cancer out of my body, and I was confident that I was in God's hands. So I slept.

Another snapshot memory: when my anaesthesiologist came in to have me sign the consent form, I noticed that she was about nine months pregnant. Truly - she looked like she was about to give birth. So I casually asked, "When is your baby due?" She laughed, said two weeks, and promised me she wouldn't deliver in the O.R. during my surgery. And my thought as she left was, "Like you can control that..."

My cancer surgery was scheduled to last about four-and-a-half hours. I had chosen to have immediate reconstruction, after a bilateral mastectomy. The sentinel node biopsy would be done, and if the node was positive for cancer, an axillary dissection would be done to remove a pocket of lymph nodes. Then the mammary tissue would be completely removed, along with some skin and both nipples. Then the general surgeon would hand off to the plastic surgeon, who would place tissue expanders under the chest muscle on both sides, partially fill them with saline, and then suture the wounds.

I knew my family would be told during surgery if the lymph node biopsy was positive or negative. If the biopsy was positive, the surgery would be at least an hour longer in order for the doctor to do the axillary dissection. When I woke up in the recovery room, I of course didn't know what had happened. But the biopsy is what I was thinking about when I went to sleep, so the biopsy is what I was thinking about when I woke up. I had every reason to believe the biopsy would be negative. The amount of infiltrating cancer cells in the breast was very small. In fact, the pathology report read that a "trace amount" had been seen. So, I was expecting the biopsy to be negative. My recovery room nurse told my husband that I asked her three times about the biopsy results. The third time I said, "Am I dreaming, or did you tell me my lymph node biopsy was positive?" And she called me honey, and said I wasn't dreaming.

I squeezed my eyes shut and felt tears fall down the side of my face into my ears. I really couldn't believe it - it was the worst news. I thought my surgery would be 'it' and now I knew I was probably facing chemotherapy. When the orderly came to wheel me to my room, I told him my biopsy was positive. And I told my nurses, and my husband, who already knew. When the doctor knew there was cancer in the node, my family was told, and also informed that my surgery would be longer, actually lasting six hours. And then when my parents came in I told them, and other family members, and all the while I was crying, crying, crying. At some point I caught my husband giving me a sidelong glance, full of concern, like I was possibly having a breakdown. "Are you okay?" he asked. No - I am so NOT okay. During the night, I remember a physician's assistant sitting on my bed, holding my hand, as I bawled about my lymph nodes. I simply could not get a grip. I found out, much later, that one of the side effects of anaesthesia, experienced by some people, is a reduced ability to control emotion. In reality, it made me a basket case, for about a day. When I woke up the next morning, I looked at my husband, who had spent the night in my room with me, and said, "I'm okay now."

The day after my surgery, my plastic surgeon came into my room to check on me. He asked how I was and I said I was so, so disappointed. I know he thought I was talking about my reconstruction, because he (rather gruffly) asked what I was disappointed about. And I told him I just couldn't believe my lymph nodes were positive. His face softened and filled with compassion. In that instant, I felt myself become a real person to him, not just a patient, and he became my ally. And he told me, " Cancer doesn't play by any rules. Concentrate on doing what you have to do to get well." I realized that I was playing a game with an opponent who cheats. I would never find a sense of fairness in this experience. And it helped somehow to accept that.

In spite of an extreme level of pain, and muscle cramping across my chest (no fun), I had an overly cheery nurse drawing smiley faces on my board and writing under patient goals 'going home today.' I must say, throughout my cancer ordeal, my nurses were, for the most part, absolutely wonderful. This nurse, however, failed to actually see me. When I told her I didn't think I was ready to go home to my children, she just smiled, assured me I was and that I'd soon be up on my feet and out of there. So I told my plastic surgeon, my newest ally, and the next thing I know, said nurse marches into my room, without looking at me, and erases the smiley faces on my board. Then she changes patient goals from 'going home' to 'pain management', turns on her heel, and marches out. I stayed another night, which made all the difference in the world. I felt like I could present a happy face to my children, which is critical, as any mother knows. Three cheers for Dr. H, the doctor who made me cry (see the post Dignity), and the doctor who helped me stop crying.

Thinking

A couple of things have happened since I last posted that have gotten me thinking. The first is that a girl from my high school graduating class died just under two weeks ago. She died of breast cancer. Since my class had over 600 people, I didn't actually know her. I saw some postings about her death on Facebook, and when I read them, I sat at my computer and cried. I cried for her because I know what she faced as this horrible disease slowly sucked her life away. And I cried for her family who is feeling cheated because someone they love was taken from them too soon. And if I am honest, some of the tears were probably for myself, because this evil has touched me and left its ugly fingerprint on my life.

When I was first diagnosed with breast cancer, my encouraging and loving friends said many things to me, like, "At least they caught it early," and, "Breast cancer is so treatable - it's not a death sentence," and, "Even women with positive lymph nodes end up being completely fine." All of these statements may be true on their face, but I am surrounded by stories, like the story of this girl from my class. Or the story of my Aunt Ruth who died of breast cancer in June, 2009. Or the story of the woman I prayed for at church Sunday whose breast cancer has metastasized to her bones twelve years after her original diagnosis. Breast cancer is a sleeping giant. Unlike other cancers, it can lie dormant for several years and then, suddenly and unexpectedly, rear its ugly head. For anyone who has been personally touched by this villain, life becomes an eternal game of watch and wait. My doctor expects me to do a self-exam of my chest wall and axillary and super clavicle (under the arm and under the collar bone) lymph nodes every WEEK. What exactly I'm supposed to feel, I don't know. It feels lumpy and bumpy to me because my anatomy has been completely altered, and I have scar tissue. When I tell my doctor this, he says what I am looking for are changes. So I find myself thinking - Oh, oh - was this bump here last week, have I felt this before, is this new, has this changed? I've decided the anxiety isn't worth it, so I simply don't do the exam.

The second thing that has happened is that I had my final medical procedure for breast reconstruction. It has been a long road starting with my cancer surgery in March, 2007, and ending Wednesday with surgery number seven. It was surgery per se, but it didn't even involve cutting. I had areolas tattooed onto my body - something I never really envisioned happening, and didn't even know DID happen until it happened to me. As I stand in front of the mirror and look at my 'new parts', I wonder, is this really me? Did this happen to me? I feel far removed from the brutality of what I went through. When I hear someone else's story, for instance, a woman facing a mastectomy, I think, "Oh, the poor girl, how is she going to cope with that? Oh wait, I did that. I'm okay." It's almost as if I forget (almost). Or when I pray with someone who is facing cancer and all that means, and my eyes fill with tears and I choke up, and I think, "Good grief, what is your problem? Oh, right, I've been there, I know what they're facing."

When my husband and I sat in the restaurant after my first plastic surgery appointment, we felt shell shocked. It was hard to grasp that I was going to be dissected and put back together like Frankenstein. I now recognize that the emotion that so overwhelmed me outside my doctor's office, that I wrote about in my last post, was grief. I was grieving the loss of my body, the loss of control, the loss of my life as I knew it. But at that moment, all I knew was that I felt raw, ripped apart, beat up. When I compare that with the distance I now feel, I am thankful that God has created us in such a way that our memories fade, become soft around the edges. We can go to them and pick them up, when we want or need to remember, but for me it's like I'm remembering someone else's life, or some story I read. I no longer feel the horrible, overwhelming emotion. This is good, it's a part of becoming well.

And so I've been thinking. I choose not to be filled with sorrow over all I've lost, or anxiety about what might lie ahead. I try instead to be filled with joy, to obey the command, "Rejoice always!" My mantra is Find Your Joy, and so I find mine, in my family, in my friends, in my faith, in my Lord, in small things, in kisses and "I love you," in togetherness, in laughter, in hope. Where do you find your joy?