TPN-one week in

 My work station in my room and the white bag of nutrients I get every night for 8 hrs.

On Tuesday,of last week, a lady from my church drove me the 45 mins to the hospital and stayed with me for the day surgery.  After a day with her I'll say she's a new friend.  Being able to connect, talk about our desires for more of God and the Holy Spirit in our lives/families/community and share some of our struggles together, and of course praying together (while I waited to go into surgery) refreshed me.  That coupled with the many prayers on my behalf, I experienced PEACE.  True peace that comes from the Father. 

I came out of surgery to find out that they had attempted to put the port in on the right side but were unable to so they had to put it in on the left.  They had thought they might have nicked my lung but the x-ray proved otherwise, thankfully.  That night I started TPN for the first time.

All the training sessions later I still felt overwhelmed trying to make sure I kept things clean and sterile in order to make sure I don't have any infections, clots, etc.  Thankfully I was able to take some videos during our last training session so on the first night my hubby played the video beside me while I tried to slowly figure it all out.

I am getting much quicker now at hooking up at night and unhooking in the morning.  I have yet to attempt the gripper (needle) change that will happen once a week.  That's too hard to wrap my head around stabbing myself with a needle.  So thankfully this Thursday when I go to get my stitches out they will also change my gripper. 

Many people have asked how I am feeling.  I guess they, along with myself, thought I'd feel really good on TPN.  To be honest it's been pretty brutal.  I have neck and back/shoulder pain (later learned that muscle in the front was cut to insert the port and that stress and tension has affected the muscles in the back ) so sleeping has been difficult.  I experienced nausea, a horrible headache for a number of days, exhaustion from not sleeping well at night.  Normally I was up once or twice a night before TPN.  Now I am up some times almost ever hour and a half or 2 hrs.  The bags under my eyes have gotten bigger and puffier and my capacity to care for myself/home/kids, etc has been minimal.  I am thankful for the few meals that were brought this week and for friends and family who have helped out with the kiddos and rides, etc.  Recent blood work showed my phosphate levels are too high which may be the reason for my weakness.  So now I await more TPN bags that will be delivered without phosphate this time and then I need to get my blood drawn up next week to see if those levels come down.  I wish we lived closer to a larger center to get blood work.  Usually it's a 45 min to an hr drive to a lab that can do this type of blood work for me.  And my nurse informed me that some of her clients feel nauseated on TPN and she hoped I wasn't gonna be one of them.  I can only pray that things will get better from here on out.

When it is easy to see all the negative I am trying to find things to be thankful for.  It's one way I can try to be an example for my kids.  I am trying to teach them to not focus on just the negatives of their days but to list of the positives too.  I am thankful for the caring medical staff team I have.  What a gift!  I am thankful that yesterday was better than the previous week and even though today I am not feeling amazing I am feeling better than when I was at my worst last week.

Thank you to all of you who have been praying for me and my little family.  I am forever grateful for you. 

FACING YOUR GIANTS

This past yr. has not been an easy adjustment for our little family and my kids have not had an easy year trying to transition back into Canadian culture and trying to figure out friendships, etc. This has looked very different for each of them.   I started reading this book by Max Lucado with my son. So when I heard this song on the radio yesterday by Sanctus Real I knew I needed to share it with my him.  It's my prayer that I can be used of the Lord to build into my kids, to disciple them, pour into them, and remind them of their true identity in Jesus.  It is my prayer that they will live spirit-filled lives and that all the hardships they have had to endure will only shape their character and enable the Lord to use it all for His glory and for how He wants to use them and their life stories in the future.

It has not been easy trying to figure out how to take care of myself when I am needing to help my kids work through some heavy stuff in their lives.  But it is what I need to do in this season so that they can work through some of their giants in their life and be able to be more secure in Jesus through it.  Before I had my port put in on Tuesday of last week my son admitted that he was worried I might die.  To try to ease his worries I promised I would write a letter for him (and his dad and sister) to read when I went into the day surgery. When I asked my son what would happen if I did pass away he pointed out a few of the milestones in his life that I would miss.  I assured him that if I died I would be in heaven.  After this last year all the more death is not something I am afraid of.  Yet for my kids, I understand how traumatic it was seeing me so ill and spending so many months in and out of the hospital last yr.  I assured him that He has an amazing dad who would take such good care of them.  Yet after that conversation I feel more of a desire to blog more of my life story, to work on the journal Bibles I started for my kids and to write letters when I get a chance to so that they will have "fingerprints" of mine left behind if one day the Lord finally takes me home.

I heard this song today too.  Oh my dear kids I long for you to know the reckless love that the Father has for you.  He's good no matter how hard life seems to be.  He is faithful and will never never leave nor forsake you.  He loves you so much and wants to kick down the lies you are believing about you or your life circumstances.  He is in pursuit of a relationship with you!

He speaks!

My little girl has a neat little Bible that I read to her at night.  It's about various women in the Bible.  As I read one of the stories to my little girl last night I realized that I needed to take some time to go back over that story on my own because I believed God was speaking to me. 

Here are some quotes from this story that stood out to me: "I'm usually a happy, positive person, but those hard times took the sparkle right out of my eyes.  I felt like I was under a stormy cloud, and I couldn't find much to be happy about."
     "That's when I discovered Ruth's story in the Bible.  Her tale starts off even worse than my summer did.  But she kept on going.  She looked up to God and His people for help.  The more I read, the more I realized: God has a good plan in store, even though we may not see it at the moment."
     "Their lives (Ruth and Naomi) had been full of death and loss, but God brought them to a better place than they could have ever dreamed."  (When I read this I had to stop to reflect.  My life last yr felt like it was full of potential death and much loss...of health, friends, home, etc.  But I know that God has brought us here to Canada, to the little town we now call home.  And I am asking the Lord to open my eyes to be able to see that He has a plan and that this story is not over.  It doesn't end with loss, He's at work and Has a plan for me and my family, even though we can't see it right now).
 
    "Life can be a pretty awesome, beautiful thing."  "But then the hard times come- like death, divorce, broken friendships, or whatever hurts our hearts-and suddenly it's hard to see the beauty.  Everything looks so dark and hopeless.  We start to wonder if God even cares.
     Ruth reminds me that He does.  God's stories in our lives never end on a bad note because He has something incredible planned for every one of His children.  Like Ruth, we just have to keep hoping and trusting in God.  I can't wait to see what He has planned for me-and for you too!  Like little birds, He has us tucked right under His wing, where He loves us, protects us, and helps us grow closer to Him.  Don't worry if you're tired or it's dark right now.  The lights will shine again, and you'll be ready to fly!" 
  "Lord, you are always taking care of me, even when life gets really hard.  Thank you!"

Health Update

Wow, it's been almost a month since I last wrote.  Trev and I celebrated 14 yrs of marriage.  My hubby wrote me a love letter and gave it to me that day.  He mentioned that there were times in the last yr he wondered if I'd ever make it to another anniversary. He admitted he prayed we'd grow old together but at times didn't have the strength to pray that.  However, he is finally starting to be able to pray that again.  We watched the Stars On Ice figure skating event for our anniversary.  We loved it.  We sat next to two older ladies.  One lady mentioned it was her 31st wedding anniversary but that it was ok her husband wasn't at the event with her because after 31 yrs it didn't really matter.  However, when you face death and walk through that valley together, each anniversary, special event, birthday, etc is worth celebrating!  So I proceeded to share that for us each anniversary meant a lot to us and was worth celebrating after having had cancer last yr.  My prayer is that I will get to grow old with my husband and that together we will see our kids get baptized, married, have kids, etc.

Mother's Day felt significant too.  Last yr on Mother's Day it was my first day I was really able to get out of the house and go to the waterside with my family, free of drainage tubes, catheters, etc.  I only lasted an hr but I went out in an attempt to spend time with my little family and to create memories.  This yr we were able to go to a neat little mini golf location and have fun playing golf together.  Even though I didn't feel amazing that day I just really wanted the day to feel normal for my kids.

On May 15th I finally met with the GI specialist I had been waiting MONTHS to see.  It was a hard conversation knowing that we had tried all we could to help me gain weight so that the next step was TPN (Total parenteral nutrition (TPN).  TPN is a method of feeding that bypasses the gastrointestinal tract. Fluids are given into a vein to provide most of the nutrients the body needs. The method is used when a person cannot or should not receive feedings or fluids by mouth.)  So since then I have had 2 of 8 training sessions that I need in order to learn how to sterilize and set up a work station, all the medical supplies I will need to order from Calgary, how to clean and change the dressings, how to insert the needle and clean the port I will be getting and how to set up and unhook the TPN.  Eventually I will be fed for 10 to 12 hrs at night.  

My first training session had me in tears.  I walked in to the little room and saw this dummy on the table.  I had to decide if I wanted a port or a tunnel line.   One would mean I could never remove it and I couldn't swim in case I would get water or sand into it.  The other meant a longer day surgery where the port would be inserted into a cavity that will be formed by the surgeon.  It means that once a week I can remove the gripper (needle part that sticks out and the tubing) for 12 hrs and attend the beach with my kiddos. Both of these options have risks like infection, blood clots, etc.  The TPN can cause my bone density to decrease and it can also cause liver or kidney failure.  They are also concerned about something called, "re-feeding" which I think I understand means that right now my body does know how to digest (just struggles to absorb the nutrients and runs through too fast) however in the beginning I will be mostly on TPN and not eating food so their worry is that my body might forget how to digest.  So I will be having to do a lot of blood work fairly frequently to monitor the liver and kidney and my blood levels.

I need to sanitize a fridge downstairs that will be just for my TPN (I think I understand that I will have about 2 weeks supply in there at a time).  I need to sanitize my bedroom and bathroom and set up a work station to store all my medical supplies and to be able to change my own bandages, give myself the needed needles in my port and hook up and unhook the TPN.  The hope is to get me from 84 lbs to 100 lbs.  So at this point I do not know how long I will have TPN for.  I am guessing months to a yr or more.  This will take a lot of adjustment for me.  The thought of having another day surgery scares me.  My brain has slowed down a lot in the last yr from the 5 times I was put under for procedures or surgeries, from the chemo and just stress of the last yr and perhaps from being in forced menopause.  So I do feel a lot dumber or slower in my processing and a lot quicker to get stressed(thus I hate city driving all the more).  Though I am underweight and take handfuls of meds a day I have figured out how to manage but now getting TPN means readjusting to life and learning all over again how to create a new normal for me and my family.  And I also am aware that I will need to really work on my mindset so that I don't get discouraged but see this as a took being used to help me gain the needed energy and health to get stronger and be a better mom/wife that my family needs.

On June 19th I will get my port.  On June 14th or so the TPN should be arriving at my home.  We were hoping to head up north for July long to see my family but I am not sure how that will look if I have this TPN now.  One day at a time.  In Matthew the Lord reminds us to not worry about tomorrow for tomorrow has enough worries of its own.  So I need to take it one day at a time.  And Romans 12:12 stood out to me twice this week, "Be joyful in HOPE, patient in AFFLICTION, faithful in PRAYER."  Father please fill me with renewed hope, with supernatural patients for myself, my circumstances and for my family and the needs around me when so often I have little strength to even just care for my own needs.  And please help me to be faithful in my prayer life.  I know from experience when I focus on the needs of others or pray for others I can more easily take my eyes of myself and my circumstances.  

The kids continue to adjust to life here.  They would give anything to move back overseas.  To be with their friends and those who were like family to us there.  My son is enjoying baseball and it's been fun to see him growing and improving in a sport he longed to play for yrs but never had the chance to till now so he does have some catching up to do. The kids enjoy having a yard after 5 yrs of living in an apartment.  They are making use of the free second hand trampoline they were given.  I am enjoying watching my little garden start to grown, hearing the birds singing in my yard and having space for my kids to play in. My husband has been busy at work, helping to coach my son's baseball and then with church related duties like ministerial meetings, youth pastor search committee or preparing for June 10th when he will be preaching so I have not seen much of him these days.  Baseball is fun but makes life more busy and my poor brain is already so overwhelmed at all the training, things to remember and setting up needed to get this TPN started that some times I get overwhelmed when I see all the things needed to be done in the house and on the yard and when I see the calendar filling up with different appointments and activities.  So this morning has been nice to have a few hours to myself to blog and reflect.

Though I really am NOT excited about what's to come this month I am choosing to see the Lord at work as I have had the opportunity twice so far to share parts of my testimony with my nurse who is doing my training.  The one day she asked questions and sat and listened for almost a half hr.  I know that the Lord is taking my "story" and giving me opportunities to share about how He was/is faithfully walking with me through all of this.  And my desire is that I can give God glory and praise for Who He Is and for His power at work in my life...especially when I am weak.

Missing T

Today I got to watch my niece make a public declaration of her love for Jesus and watch her get baptized.  I had tears in my eyes.  I was so proud of her.  I am so thankful for the godly role model that she is to my kiddos.  And I am so excited that she's on a journey of learning to hear God's voice.  And I am so thankful that this morning happened to be a "good" morning for me health wise which meant I was able to fully engage with others and the Lord during the service which I have been needing lately.

During the service my little girl said, "In T we were able to gather all around those who got baptized but here we can't?" The baptismal tub was on stage here so it was different.  This made me miss our church experience in T.  I miss the worship, the dancing, the passion, the prayer times.  I miss the exuberant worship times.  Though I struggled due to the language barrier I loved being able to watch the people gather around each other at the end of a service and prophetically pray over each other. Some times it feels like it was years ago that we lived there.  But just today, my mom sent me a note saying "it was hard to believe just a yr ago today they left T after coming to visit us and help us pack up for our move back to Canada.  Wow, what a yr.  I am so thankful my family was able to come out there and see what our life was like there, meet our community and help me with the kids and packing up as I was just released from the hospital the day they arrived for their visit there.  I miss our friends, community and life there.  I know that with my health situation there is no way I could be living there right now but it feels like it would take a miracle to even get back there for a visit to be able to say a proper good-bye for closure.

Now it feels weird to think about the possibility of being in the hospital again.  I finally have a Dr. appointment for May 15th to see the GI specialist at the Manitoba Home Nutrition program.  We will be discussing the pros and cons of TPN and I guess when and if I will start on it.  If so I could very well end up in the hospital for a few days, have to get a pic line put in, and have my blood work monitored to make sure everything is working.  I know I will need prayer as the whole having to stay in a hospital will bring up some feelings from a yr ago that I don't want to have to revisit.  I will need to soak in the Word of God and listen to Worship music to keep my spirits up especially during that time.  I had a sweet hospital room all to myself in T.  Here, I will most likely have to have a roommate which I am not looking forward to either (but I will pray that the Father will use me if that is the case to be a blessing to my roommate).  I guess I was spoiled when it came to hospital experiences in T.  The nurses were at my becking call there and always willing and ready to help.  Except when I was begging for more meds and they'd tell me I'd have to still wait an hr or more yet to get my next dose. I know if I have to stay a few days in the hospital that will be hard on my kids and I am praying that childcare will get worked out for that time too.   My son has his spring concert on the 16th and I was supposed to do a spiritual retreat with some friends on the 18th so I am hoping if I am supposed to be in the hospital that it will wait till after the 18th. 

And perhaps the Dr will tell me I am fine at 82.4 lbs and don't need TPN. Who knows!  In the mean time I will keep trucking along.  Spring has sprung which means I need to figure out how to garden again (it's been over 10 yrs since I planted my own garden).  I found out my little girl's babysitter is really busy working a different job this month so she won't be available. This just means I will need even more energy to be a good mom, take care of my house and my yard and not get a many naps in as I would like. 

This morning I got up early to spend time with Jesus.  The words, "RESPOND DON'T REACT" came to mind.  Oh how I need the Lord's help to respond and not react when it comes to parenting and dealing with situations that arise in our home.   I believe we (especially the kids and I) are still adjusting to life here in Canada which means some days there are emotions that are high (or low) in our home. I have been working at growing my own little home business but this takes up time and energy.  I need to make sure I don't neglect my relationship with Jesus and my little family either.  BALANCE...it's all about balance. The verse I have on my black board that I am trying to focus on right now is James 1:19NLT: "Understand this, my dear brothers and sisters: You must all be quick to LISTEN, slow to SPEAK, and slow to get angry."  I am not perfect.  In fact I am so very weak physically and emotionally these days but it's in my weakness that He gives me His strength.  I am so thankful for those people who have either dropped by this week or stopped me at church or sent a message to tell me that they are still praying for me.

Spring

Spring is starting to arrive.  Yesterday was beautiful.  I have been enjoying watching the Blue Jay in my back yard, hearing the birds chirp, feeling the sunshine on my skin and going for a little walk with my kiddos while they are on their scooters.  Spring...a new season.  Last year I feel like I missed out on Spring.  I was finally out of the hospital but I was still healing.  My family was out to help us pack up our apartment and to help take care of the kiddos while I spent the time resting, healing, going to doctor appointments, and trying really hard to get strong enough to get on the plane to fly and move back to Canada.  Some how it feels like last Spring just flew by and I missed out.  However it's a new season and I feel stronger than I did a yr ago.  I still lack a lot of energy but I now am able to ride my bike with my son for a short bike ride or walk alongside my little girl on her scooter.  I am able to sit and enjoy the Canadian geese standing outside the window rather than laying in bed feeling miserable and wondering if life would ever get better which is what I did a yr ago.  So there is hope.  Spring reminds me of HOPE, of newness and life.  So I am praying that the Lord will met me in a special way this season.  I had coffee with someone this week and just realized how much of "in a funk" I was feeling.  Purpose, I long for purpose.  The Lord has decided He's not ready to take me HOME yet so I am just wondering what my PURPOSE is here on earth.  Yes, I am here to be a light, a testimony of Jesus' love, healing and presence.  But how does that shine through my every day life?  I am not sure.  I do find it interesting that I have had the privilege of walking alongside a couple people in their grief over the loss of a loved one in their life since I have been back to Canada.  I count that a privilege because grief is so real and raw and hard and not everyone gets it.  Not everyone is willing to talk about death and loss and love and life like that.

I have been behind in my blogging.  Life has been busy.  We visited my family for Easter and I enjoyed connecting with my 98 yr old Grandpa.  Then we celebrated my son's birthday and well life just got busy.  But I really do want to continue to write out my "story" for my family to have.  So many ideas or what to write, just got to figure out where to start.  Some stories will be written down but not put on the blog as they are too intimate to put out there on the world wide web at this point but I want me kids to have my WHOLE story...the good, the painful parts, the bad, the ugly, the joyfilled parts...the truth.  If I were to ever pass away I want them to have stories so that they can remember who I was and how Christ grabbed ahold of broken me and transformed me into HIS likeness.

He's Growing UP

My son's birthday is just around the corner.  Seeing as in a different post I wrote a little about my miscarriages and my pregnancy with my little girl I wanted to share a bit of my son's story.

We got married in 2003 and we had our lives all planned out.  We were gonna go on a short term missions trip to Africa and after that was finished we were going to head to Korea to teach English.  The plan was to make money, come back to Canada and then start a family.  Well things didn't go as planned.  We had applied to teach English after our 10 mths on the program and spending 8 of those in Africa.  However, because the Bible School where we met became accredited and changed it's name in-between when I graduated, and when my husband did, our degrees looks similar and yet different.  They were having issues with forged degrees and so they just assumed ours were as well.  So in the end that plan fell through.  My husband used to work at the local Credit Union so he went to see the manager to see if there was a job available.  The manager laughed and said he has already ordered a suit in my husband's size because God has told him my husband would be back working there. 

So we decided to put down roots in our small town for a bit.   I started to work in the office at a local factory.  However, what I really wanted was to be a mom.  I didn't enjoy going to work before my husband and getting home after he did.  I did not enjoy my job and all I wanted was to be pregnant.  But that didn't happen right away.  Months of disappointment and negative pregnancy tests went by. 

One day we were reading our Bible and working through the devotional OUR DAILY BREAD together.  My husband read the reading and verse from the "wrong" day without knowing it.  The verse for that day was 2 Kings 4:16: New International Version (NIV)
16 “About this time next year,” Elisha said, “you will hold a son in your arms.”

When we realized we read the wrong reading, we looked at each other and wondered if this wasn't the Lord speaking to us.  

Eventually I quit my job and started at a new factory in the office.  I enjoyed this work environment much better.  I remember seeing my Dr. and starting basic fertility testing.  I had a painful HYSTEROSALPINGOGRAM the first month I started the new job.  2 months later I woke up realizing that if that verse from a few months before was true I should do a pregnancy test because I would be pregnant. Sure enough we finally had a +pregnancy test.  We were overjoyed.  We kept it a secret for a bit.  I remember a dear teacher friend of mine, with the gift of prophecy, had been praying for us for the months we had been trying and praying for a baby.  I found out I was expecting around the end of August and at the beginning of September she sent me an email asking if I was pregnant because she felt the Lord had told her I was pregnant but she hadn't heard from me yet.  :0)

All through my pregnancy the Dr. thought I was gonna have a girl but I knew in my heart that it was a boy.  My water broke after 5 in the am on April 15th but after 19.5 hrs of labour my son's heart beat was going crazy.  I had a wicked cold and I so tired.  After midnight they decided to perform a c-section.  I was pretty out of it from the meds but I do remember when he came out saying, "I knew it all along, scripture was right!  It's a boy." 

I can't believe that little boy will soon be 11.  He's grown up so much.  We love our son and are proud of him.  I appreciate how KIND he is to others and how he loves to LEARN.  He loves facts, reading, knowledge and LEGO.  He likes to joke around too.  He is our first little miracle and we are so thankful for him.  He loves to dress up in dress shirts and ties or suit jackets and he has a little business mind.  We look forward to seeing how the Lord will use our son in the future.