December 14, 2009

• A Forgotten Anniversary

  I actually forgot my cancer anniversary this year – for the 1st time in 6 years, I didn’t even think about it – it didn’t even cross my mind as we rushed into December this year… it’s such a distant thing now, an experience nearly forgotten altogether, only the passing reminder of the mastectomy scars — and even them I’m so used to that it doesn’t cause me to reflect – hardly ever.
  
  I have been diligent to post ever year about it — so now having remembered, I’ll post — in remembrance, but mostly in thanksgiving!! This was from my post last year, slightly updated.

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  My anniversary and my daughter’s anniversary

  I am thankful it is a happy one… that is, 6 years and cancer free for me – and Gracie all mended up! 

  Going back to Thursday, December 4th, 2003:  I was busy doing lots of things, getting ready to go to an afternoon appointment to have a biopsy on a lump they found in a routine mammogram in late November two weeks before. I was trying to balance my checkbook on the computer while talking with my friend on the phone, when I heard an ear piercing scream — you know, one of those that goes down to the core of you — you know something awful has happened.

  I run in to the front room to find my daughter, Gracie laying on the floor screaming in pain.  She was 6 at the time.  My other daughters were trying to explain to me what happened — she was running and had slipped on the floor.  We had our cleaning people here and Amelia was mopping the tile floor.  Gracie ran chasing the cat and stopped at the end of our couch — one foot on the tile floor, one foot on the carpet.  But the tile was wet, which sent Gracie’s foot and body sliding in a very weird twisted position.

  It wasn’t making sense to me at the time.  Gracie wasn’t in the kitchen, nor was she on the carpet by the end of the couch – rather she was a ways into the family room.  My brain couldn’t figure out how she had fell and got where she was.  Days later I found out that my oldest daughter, Elizabeth, had tried to carry her to me, but Gracie was screaming in pain so she laid her back down and came to get me. She thought when she tried to move her that she made it worse, so the poor girl didn’t tell me until days later.  It was then, too, that Elizabeth told me that she heard Gracie’s leg crack when she was falling. A big *SNAP*.  Had I known that, I would never have tried to move her myself, as I thought she just ripped a muscle or ligament or something.

  I tried to move her but she just screamed.  I didn’t know what to do -so I just quickly packed her up and laid her on the bench seat in the van – she was in so much pain.

  Every time I had to brake, every bump, every little movement made her scream in pain.  I went to prompt care (which was closest to my house). I ran in to get someone to help me, but no one would come out to the car to see her.  They told me they had a 2 hour wait and I would just have to wait or take her to emergency.  I was so upset — at that point I should have called an ambulance.  The thought of now driving another 8 miles was just unimaginable. But I got back in the car and headed for emergency with Gracie screaming in the back, trying to use calming words to comfort her.  I tried to call Steve at this point to let him know I had to go to emergency instead of prompt care, but my phone was dead, and my car battery charger had to be bent in the cord just right to make it work.  So there I am trying to drive on the freeway, trying to hold the cord just right, while trying to call him and keep Gracie relatively calm.  But my phone would NOT work!

  Up to this point, I was holding myself together.  I pulled up in front of emergency, came around to the side of the car and opened the van door.  I was telling Gracie that I needed to leave her for a moment so that I could go in and get some help – obviously she’s screaming for me not to leave her.  Just then two doctors were walking by and they stopped to ask me what had happened.  I told them she hurt her leg and then I lost it…I just looked at them with tears.  They sent the guard in to get a wheelchair.  I couldn’t even squeak out a word to say that she was so hurt she couldn’t sit in a chair.  So out came the chair, finally now getting a hold of myself, I told them I needed a bed. When they went back in the bed, the guard asked me if I needed anything – I told him I needed a phone so I could call my husband.  He gave me his — sweet man — one act of kindness that will forever stick out in my mind — a sweet mercy God blessed me with.

  No one wanted to be the one to move her to the gurney, so I just did it quickly her screaming the whole time.  Once in emergency they gave her some morphine, but it didn’t really help.  The Dr came in and just looking at her leg said in amazement that she had broke her femur. I guess femur breaks are unusual and they maybe see one in a year.  The xray confirmed it.  It was all a great trial of my strength as every time they had to move her, weigh her, you name it, she would be screaming out in pain.

  

  This is Gracie in emergency… you can see her leg is real swollen. Thankfully I remembered to grab a few comfort items for her one the way out of the house, her pillow, her reindeer, and her blankie.
   
  

  
  

  
  Gracie was hungry after a while and we tried to feed her but she just got sick.  She was sooooo miserable!

  We needed to wait until the pediatric orthopedic dr came to talk to us about what needed to be done.  We waited for hours.  Finally it came the time when I need to go do my biopsy (called a stereotactic biopsy), which was just across the parking lot from where we were.  So I figured I might as well go do it as we were waiting.

  That was an ordeal.  It was bizarre (and painful) — a specially designed examination table where I lie face down, and then the table is raised and the double needle biopsy procedure is performed by the doctor and a nurse beneath the table. I cried through the whole thing, not so much for what was going on with me, but because I finally had a moment away from Gracie where I could release all my stress emotionally without upsetting her.

  The Orthopedic Dr came while I was at the biopsy.  He said that the best thing would be to have this external fixator put on her leg surgically.  That surgery was set for 7am the next morning.

  THE NEXT MORNING?????????  Are you kidding me?? I was so upset.  She had to spend the whole night in pain???  She was admitted into the hospital and we braced ourselves for the long night a head… and what a horrible night it was.  We were in some overflow area of the hospital, not even in a room, so when she screamed it just echoed everywhere down the hallways.  I was so exhausted by the next morning.  Gracie would get upset if I got upset and would not let me leave her side — so a night of trying to keep myself in check and come up with comforting words stretched me to my very limits.  Praise God for His strength, especially when ours is depleted!!!

  Thankfully, also, we had some very competent nurses that tried different things to make her comfortable. One of them had noticed that she was twitching — which I guess is common when you have a break that the muscle twitches around it — so every time it would twitch, it would cause her bones to move — lots of pain.  So they gave her some valium to calm her muscles. So she did sleep a bit — maybe 6 or 8 times of 10 minutes each over the whole of the night. 

  The surgery the next morning, Friday December 5th, was quick — like a half hour tops.
   
  

  

  This is her right after surgery.  Finally — peaceful.  

  
  

  

  This is what the fixator looked like.
  

  
  

  And this is what the break looked like in an xray.  Gracie was hospitalized for 6 days.

  It takes two days to get results back from a biopsy and because I did mine on a Thursday, that meant that the results would not be in until Monday.

  Over the next couple of days getting smile out of Grace was impossible. 
  

  
  

  
  Monday morning finally came around.  I called the Dr’s office to see if my results had come in.  The receptionist told me that my Dr had the day off and made me an appointment at 4pm with another Dr in the office to go over the results when they came in, which she said, should be in within the hour.  10 minutes later she called back — said that Dr. Masserman was coming in after all and they’d like to me to see me and discuss the results in a 1/2 hour (his office is on the hospital grounds as well). 

  Dang… that wasn’t good news.  I called my friend Thelma and cried on the phone — “They want to see me now…” She tried to encourage me not to get upset until there was something to get upset about.  But I knew…. I knew from the fact that Dr Masserman was coming into the office on his day off… I knew from the look on the receptionist face when I walked in… I knew when the Dr Masserman was asking many questions on and on about Grace instead of just telling me the results were clear… I knew, and finally he said it: Breast cancer… kind of just like hung in the air like a bad smell…

  We left the office and I fell apart. Up to this point, not many had even known I was going in for the biopsy… How was I going to break this to my parents, my kids, my extended family, my friends?  So I threw it on Steve.  Told him he needed to call everyone, because I couldn’t take having to retell this over and over and over.  

  My friend, Thelma, came to the hospital to stay with Gracie while we went to my appointment. She brought my daughter, Elizabeth with her.  Thelma and her had to endure Gracie’s physical therapy while we were gone.  They were in another room while the physical therapist was working with her, but she would just scream the whole time and it went through every wall.  Enough to make anyone’s nerves rattle.

  When we got back Elizabeth was there and I didn’t want her to see me crying — didn’t want her to think the worse (like I was dying or something) before we were able to tell her differently.  But she saw me and was shook up.  We tried to make everything sound a good as possible, which was difficult considering I was trying to come to grips with everything.

  My friend Sue, came to the hospital to spend some time with me.  This is a picture she took of me while she was there.  And this is where I stayed, slept, etc for the 6 days Gracie was in the hospital.  My eyes are red from crying…

  
  

  I cried on and off for 3 days straight, always trying to hide it from Gracie, as it made her very sad to see me sad and she had enough to deal with. But I wasn’t crying because of the cancer, rather because I was I was told that I would not be able to have any more children.  That was a huge blow to me.  I wasn’t mentally done yet, even though we had been unable to get pregnant for the 5 years prior to this, there was still hope that maybe God would open that door again, but it was definitely being shut.

  The nurses were very concerned for me as well as Gracie.  We were treated very well by everyone.   They offered much comfort to me during those days.

  Gracie did better and better each day.  Moving was a screaming ordeal, but even that improved every day.

   

  
  This was Gracie ready to come home.

  Grace got out of the hospital completely needy — wheelchair bound and had to have everything done for her.
  

  

  We set her up in my room next to my bed.  Thankfully we still had a little toddler bed up in the attic.

  

  My surgery to remove the tumor was that next Monday (15th). My mom came down to help out as  Grace need to be  lifted and carried and I was not going to be able to do it (during the day when my hubby was gone).

   

  My mom helping Gracie in the shower

  This was just after my first lumpectomy.  We took this picture to send to my sister in Idaho.
   
  

  

  My friend, Karin Sanders, made Gracie these underwear that had velcro on one side.  That was a huge blessing — finding stuff for her to wear was tricky. The girls had these pants that had snaps up the leg — we used those a lot and then just other times dresses or skirts.

  Gracie needed to be taught how to clean her pin holes, which needed to be cleaned several times a day with peroxide and a q-tip.  Gracie did not like to see her leg, so we kept it covered with an ace bandage most of the time.

  
  

  
  The surgeon thought he could go in and just do a lumpectomy to remove the cancer and some follow-up radiation… everything sounded so neat and easy, but, alas, the results from the Dec 15 lumpectomy revealed that not only did they not get a clean margin, I had a second type of breast cancer as well.  This was located in the milk ducts.
  
  Another lumpectomy on the 22nd trying to get a clean margin.  About 1/8 to a 1/4 of the breast was removed between the two surgeries.  And because it was all the way to the breast wall, it left an heavy indentation in the breast tissue.

  On Christmas Eve I got the test results by phone from my surgeon — the tests showed that it was all over my breast (still no clean margin). I would need a mastectomy to remove the cancer completely from the breast.  I had also finally gotten the pathology results.  My tumor was a very aggressive one. My surgeon scheduled me for an oncologist appointment that afternoon.
  
  Thinking back, it was even a “fluke” that I had gone in for my mammogram.  I only did so because we had met our deductible for that year.  Otherwise, I’m not sure that I would have found it important enough to go in for one.  We make a gazillon “random” choices a day. This one turned out to be the one that saved my life. Because of the aggressiveness of the tumor, it would have been a matter of weeks before it had matastsized and the matastsization would have spread quickly… and then this would have been a story about the quality of life (or impending death) rather than about being cancer free…

  Off to an afternoon appoinment with the Oncologist (still Christmas eve).  More bad news from him.  It wouldn’t be enough just to have the mastectomy, I also needed chemo because there was like a 40% chance, because of the blood vessels that tumor creates, that it had spread into my blood stream where it could deposit somewhere — even though the initial tests showed that it hadn’t matastasized to my lymph nodes.

  I didn’t want to tell my parents, who were at my house.  I couldn’t bear dealing with their fears and sadness while trying to come to grips with mine. So although we told them about the mastectomy (they were next to me when I got the call at home), I didn’t tell them about the chemo, which I found out about at the oncologist’s, until after New Years and we had the test results of the CT & PET scans. 

  Steve, earlier in the month, had written out “NOEL” on our roof with Christmas lights.  When we drove in to the driveway from the oncologist appointment that Christmas Eve, he looked up there and said “Noel?? We should change it too: Oh hell!” I love my hubby and they way he makes me laugh even when everything around us is caving in.
  
  

  

  Gracie and I on Christmas Morning
  

  
  Gracie got a snow white dress up for Christmas — she just loved it!
  

  

  The next few days were hell for sure.  I hadn’t had my CT or PET scan so I didn’t know if it had matastasized, didn’t know if I was dealing with life or death or just a bump in life.  I struggled terribly to even smile.  But it was Christmas so I did try really hard – but the news was so heavy on my heart — would I even be around for next Christmas?  So every so often during the day, I went into the bathroom and just cried.

  About three days after that, I think I finally was prepared for the worse and an interesting peace came upon me.  I was resigned to whatever God had for me.  I remember driving with Steve to the appointment to get my CT and PET results with joy, not dread. Whatever came I knew my God would lovingly see me through.

  I had the tests the day after Christmas and on Monday, Dec 29th finally… Good news.  It had not matastasized!!  But that following Monday, I would already start chemo…

  In preparation for my hair falling out, I came home from my appointment and cut my hair short.
  

  
  

  And then again the day before my first Chemo on January 3rd.
   
  

  

  Chemo started January 5th and went for 4 sessions 3 weeks apart ending on March 5.   The first one was really bad; I spent the most of the night laying on the floor of the bathroom.  The next three days that nausea would not leave me.  I remember calling the doctor on that Thursday in tears — will it EVER go away???!  I had to drink large amounts of water to rinse the chemo from my system – but I could only suck small amounts at a time through a water bottle laying down.   Finally on Day 6, I felt a bit better and started to eat.  The next week I had to go and get my blood tested.  I had to have one red blood cell shot — and then had to go in every day for 5 days for white blood cell shots. To this day, I dont’ think I have had anything quite so painful. They give it to you in the back of your upper arm very slowly.  I swear I almost passed out every time!!!  This causes your white blood cells to start producing, which your bone marrow makes.  So all my bones would start to hurt horribly (especially my jaw – it felt like someone was pulling out my teeth) and I would run a high fever.  This lasted about 2 or 3 days after my last shot. Finally the 3rd week I felt back to normal, only to start the whole process over that Friday…

  Each successive chemo I wasn’t down for quite as many days — maybe 4, then 3, then 2 — amazing how your body can start to cope with something.  Although by the 3rd one, my white blood count would be almost nil when I would go in – so then they gave me this super duper white blood cell shot that would last for a week — Oh my gosh was that ever painful living through that week.  It was a $5000 shot!  Yikes!

  I felt pretty sick and was down for about 5 days, but did a bit better though each one, not being down so much or nauseous for many days, rather maybe two days.

  My hair fell out two weeks after the first session — in handfuls!!  That was something that even though you prepare yourself for, when it happens it completely blows you away!!
  

  

  January 22nd
  

  I got a wig, but I think I only wore it twice — it was too itchy. 
  

  

  I mainly did a scarf thingie.

  
  My Mom and I

  It was a long haul for Gracie and her physical therapy, which thankfully was here at the house every three days — a very painful road to full mobility.

  

  She had another month of physical therapy.  Here she is with her physical therapist, Soriya.
  

   

  Gracie was amazing in zooming around on the floor.  She would sit on the floor with her leg straight out in front of her and scoot along the ground with her arms lifting her off the ground.  I was amazed how quickly she could get around like this.  Much quicker than the bulky wheelchair!

  She finally got to the point of being able to stand on her leg without her walker, but this was not until late February.

  

  Gracie’s got her fixator off on our anniversary, March 3rd. 

  

  Even with cleaning those pin holes several times a day when she had the fixator on, we still had issues with infections.  This, unfortunately, has caused her scars to be pretty deep and still noticable today, especially on the top two.  But she doesn’t seem to mind.  I would always tell her from the beginning that they were Jesus kisses on her leg – God’s mercy in being able to heal such a horrible broken bone!

  Here she is so excited to finally get to wear a pair of pants after 3 months.

  

  She limped for a while, but now you’d never know.

  

  This is her in August 2004 – you can see the pin hole scars in her leg.

  
  

  I felt God’s grace and mercy upon me day and night.  I had some down time, but those, PTL, were few and far in between.  I think I cried more for Gracie than I ever did for anything I was going though.  I mean, God gives you grace to deal with what you are walking through, but not always what others are walking through. And watching your kids suffer is NEVER easy.  It was a time that I was very close to the Lord.  I felt so much peace — definitely that peace that surpasses all understanding and was outside of myself.  There was nothing in me to lean on my own ability to deal with this, so my strength was found in Christ alone. 

  
  

  
  Easter 2004
  (Oh look — we hadn’t broken our wall out yet into the kitchen!)

  I chose in April to have a double mastectomy (because, I mean, who would want to go through this again!). So as of April, I considered myself to be cancer free as having gone through the chemo and mastectomies, assuming the chemo has done what it was supposed to do, which was kill any microscopic cancer cells floating in my body.

  
  Here’s me recovering from my mastectomies.

  
  

  My hair started to growing about 3 weeks after my last chemo. 

      

  
  

  
  6 weeks, May
  

  2 months, June
  

  In July we went camping.  I laugh at this picture because it looks like Matt and I have matching haircuts!!
  

  August
  

  September
  

  

  December

  

  
  It grew fast, growing almost 1/2 inch a month.  It came in thick, and curly in the back — which is so funny because I’ve always had pretty much stick straight thin hair!!! 

  Alas, the curl is gone and I’m back to straight hair now (this was taken November 2008).
  

  

  At the time of the mastectomies my surgeon also started reconstruction.  That was a long painful process which stretched out over the next, where I had to go in every 2 weeks and get injections of saline with this 4 inch needle into these reconstructive pouches that were put in during my surgery. YIKES – you should have seen this needle — very painful thing…  This was to slowly stretch out the skin for the final reconstruction implants.  That surgery was in late September 2004.

  When I was told that I would need to have 4 more years of oncologist appointments 4 or more times a year, it seemed like forever away.  5 years of this!  I naively thought that once I had the chemo and mastectomies, I wouldn’t need to do anything else — why? It was all taken care off.  Never thought about after care.  And now, those 4 more years have passed.  I still need to go 2 or 3 times a year for blood tests, but I am officially done with having CT & PET scans — officially declared out of the woods.

  My family and friends worked overtime to help me, support me, encourage me… with meals and driving me places and taking my children here and there, praying for me and with me, etc etc etc . My mom made several trips down her to help me during each surgery and recovery.  It is so humbling and I feel very blessed and loved.  God’s grace and mercy held me up through every twist and turn.
  
  Well that’s about it. 
  ~Me
    

  • 11:28 pm
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