Health Update

Yesterday was a full and long day.  Thankfully I managed to be able to have 3 appointments in one day.  This saves on the number of times I need to go into the city but just made the day tiring.

First up was my surgeon.  I had my 4 surgeries done in 2017 overseas but when we moved back last summer I was assigned a surgeon here that I see once a yr in case the cancer were to come back and we'd need to consider surgery again.

This Dr. is young.  My husband thinks he has the best bedside manner of any Dr. we've seen.  And I have seen A LOT over the years.  Usually I have to wait an hour or more to see him past my appointment time, but once I do see him he is so patient and willing to answer any questions that I have.

I have been in pain for over 6 weeks now.  Maybe more like 8 weeks and the pain has seemed to have gotten worse since the holidays.  Now yes, over the holidays I ate more freely, and foods that I knew might hurt me but I wanted to enjoy food too.  However it's not all because of something I ate.  I just know there are nights I am up many times to use the washroom and many times I crawl back into bed, hug a pillow and wimper in pain.  There are days it's so bad I am in tears.  But most people can't see that.  They just see that I look healthier.  And when I look at a picture my daughter has in her room and compare it till now I can see that difference too.  It's amazing how going from 80 lbs to 94 lbs makes a huge difference.  A lot of that weight gain has been hydration but I have also put on weight all thanks to TPN.

January 19th marks 2 years since my appendix was removed and the 26th marks 2 years since I was told I had Goblet Cell Adenocarcinoma.  So after 4 surgeries total I have been told I am NED (there is no evidence of disease on scans and on bloodwork).  The surgeon told me yesterday that it's an aggressive cancer so if it were to come back it is highly likely to come back in the first 2 yrs.  So this means that I might have a better chance of a longer survival because it hasn't shown up in the last 2 years.  He informed me I will still need to be followed up on for years yet to come.  So this is the good news.  But what about all my pain.  Perhaps the HIPEC (hot chemo) did damage to my intestines.  Perhaps the scar tissue is causing issues.  Perhaps my nerves in my intestines that are left have been damaged.  Whatever the case there isn't much we can do.  And if the cancer did come back he's not even sure he could do a second HIPEC on me.  I am on many many different meds and supplements.  Some days I don't get around to taking them all cause I keep forgetting what and when to take them and need to make sure I time everything out right too.  I see my pain doctor next week so will see what he says.  I have a scan in spring to see if anything shows up on there.  I asked him if he has seen anyone with as bad of a short bowel syndrome as I have and he said no.  Guess I am special.

 Notice how tired and boney my face looked in the picture below.  That was a week before we moved back to Canada summer of 2017.

Growing up my Dad always would say, "God loves you and you're special."  When I met with the surgeon I was fighting back tears in our meeting.  I had asked about getting a bag (ileostomy type thing).  I have been considering this and have been praying about if for the last 2 months.  However, he informed me that it wouldn't be a good idea.  He actually said it could be dangerous for me.  That I would become more dehydrated.  That in the process of the surgery I would lose even more bowel of the little I already have.  He worried about too much scar tissue and causing some fistulas inside my body from the surgery.  So I was discouraged and wondered if I would ever experience a day without the pain, discomfort and countless bathroom trips.  

Next we talked about my stress levels (over my health, family issues, and other things) and how that might be contributing to some of the pain.  I have been reading a lot about the whole gut/brain connection so I was kinda happy when the doctor assistant brought that up.  Anyways, due to finances I have not regularly gone to see my counselor.  They are looking into setting me up with someone through cancer care or seeing if I can get my counselor sessions free.  As I was leaving the surgeon's nurse came in.  She told me she was there any time I wanted to talk.  Then she said, "I know it's hard.  You used to "work overseas" right?"  I guess she remembered from before.  When I said yes, the tears came again.  I used to do that and now I struggle to know what to do with my life now.  She told me she was praying for me.  Right there in the office...Yes I was reminded I am special.  That God does love me and I even have health care professionals praying for me.  I am incredibly thankful for the caring medical team God has placed around me.  This is NOT an easy journey but I am also NOT alone!

I am feeling that this year I really need to press into my alone times with Jesus, to reading the Word and to arm myself with His truths.  I don't know how long I have to live so I need to not live life worrying about being politically correct and worrying about offending someone because of my beliefs and love for Jesus, or keeping up with what's all the latest and greatest things in the world.  Instead I need to make sure I sit and soak in HIS presence.  It can be stressful for me to have too much on the go so I am realizing all the more that out of my times with Jesus, He will fill me up and I can pour out from that place.  It's time with HIM that is the first step to working on my stress and health issues.  

The next doctor I saw was my gynecologist.  I see her once a year.  She is really sweet.  I am not pumped at all to be on hormone replacements but she reminded me again of the risks of having a hysterectomy at my age.  Due to how thin and small I am, to the fact that I am on TPN and struggle to absorb my nutrients properly, I am at more of a chance to get a heart attack or a stroke over getting breast cancer. She reminded me again of the importance of daily taking my calcium and Vit. D.  Those things I tend to forget about because I'm too busy taking my other meds.  She also wants me to do more strength training.  This is a year to get healthier emotionally and physically I hope.  

My last appointment was seeing my GI specialist.  We talked about how I have gained 10 lbs since I started TPN in June.  Due to my gut pain and issues starting next week they will increase the nutrients and calories in my TPN bags for a week.  This means I don't have to eat.  They are hoping this gives my gut a break and my intestines a rest.  I will need to eat a little here and there to keep my reactive hypoglycemia at bay.  This is a trial and I will also do this 6 nights and only get 1 night off instead of the 2 nights off that I have been enjoying.  Right now the bare minimum they want me to get to is 97 lbs.  That's only 3 lbs away.  The GI doctor noted that my IRON levels have been dropping over the last 4 visits going from a low 20 down to 12. This could be the reason for my exhaustion, tummy pain, etc.  I will be going next week for an IRON iv infusion which will take a couple of hours.  And my GI Dr. did say he's seen worse cases of short gut than might so I guess that's a positive thing to know it could always be worse.  My TPN nurse also asked me to get used to inserting my own gripper. Right now I have two nurse friends that come and take turns doing it once a week because I can't stand the thought of putting this needle into my tiny port and hoping I get it into the right spot.  I used to be so afraid of needles as a kid I'd go to the health nurse to get them rather than at school.  I would cry my eyes out in fear of needles.  So it will be another step in having to do this to myself.  This gripper needle is in my 5 to 6 days a week.  I was hoping to get off TPN soon but the doctor said, NOT IN THE NEAR FUTURE.

So that was my day yesterday.  I am thankful my hubby took the day off of work to drive me to my appointments and chat with the doctors together with me.  I am thankful for all of you who pray for me regularly. I have been listening to this song lately and soaking on the words.

38 and end of 2018

There have been some thoughts swirling around in my head since my birthday last week.  I remember being in high school and thinking someone who was 38 or close to 40 was really OLD!  Now I am here and realize in 2 yrs I will be 40 yrs old.

So what I am about to share is me being really honest. Please don't read too much into it though. When I was in Jr. and Sr. high I struggled with some depression along with anorexia, loneliness and other things.  I was a pretty morbid thinker in some ways.  Often planning my funerals and who I would want to be my pallbearers (which changed based on friendships changing) or what music I wanted played at my funeral.  When I was around 17/18 years of age, I remember telling my boyfriend, at the time, that I had this thought in my head that I wasn't going to live past the age of 40.  I was really hoping Jesus would return by then.  I was yearning for HIS return already back then.

Years have passed and I received healing for the anorexia and the depression.  I still feel lonely at times but God has blessed me with some incredible friendships near and far.  And I have gotten better at not being so morbid and choosing to think more positively.  I really haven't thought much about being 40 until this past week.  The night before my 38th birthday the reminder of that conversation years prior flooded my memory.  It was like I was plagued with the reality that if that truly was going to happen I now had 2 yrs to fully LIVE.  Ofcourse I ask the Lord for another 20 or more.  I really want to see my kids get baptized, grow up, get married, have kids, etc.  I want to grow old with my husband and see more of the world with my little family.

I have not fully lived life to the fullest this last yr. It has been a very difficult year.  My health continued to be a struggle, had many Dr. appointments, sleepless nights, boughts of pain and exhaustion and ended up having to go on TPN (getting nutrition through my port 5 nights of week).  There has been little peace in my home, especially in the last 5 months or so.  And when the kids would fight with each other or push back at our parenting I had little patience to deal with it in a loving and patient manner.  This resulted in my own tone or impatient/anger adding to the already lacking peace in my home.  My hubby and I had some differing views on a certain topic and we have had to learn to work through that.  I have had some nights where I just wish the Lord would take me so I'd be free of this sickness and pain and where I could spare my family from the burden that I felt I was to them.  I have days where I still wonder why we had to move back to Canada.  What is life supposed to look like for me now?  What good am I like this to those around me.  What do I have to offer when I am so broken.  Is this why some of my friendships have changed...people don't want to be around me like this?  But then I am reminded that for some reason He's keeping me alive.  I have to remind myself that I am doing better than I was a year ago.  I can only hope that this time Dec of 2019 I will be doing even better.  Hopefully by then I will no longer be on TPN and my short gut syndrome will have improved greatly.  I have to remind myself that I have 2 precious kids and an amazing husband who still need their mom and wife around.  I have to choose gratitude and positivity.  I have started to see a counselor that I can cry infront of and be utterly honest with and I have a prayer mentor in my life that I share with from time to time.  We also have an amazing counselor for my kiddos and our last session was a family session.  It was so good for the 4 of us to work together with her.  We are not perfect.  I won't ever claim to be.  I need Jesus cause without him I don't know where I'd be.  I am working on MINDSET.  It's something I am trying to teach my kids and something I have had to work on as well for myself.  And on January 25th I am looking forward to attending a SET FREE conference as I know there are a number of areas in my life that I need to find freedom and healing in.

So, No I don't think I will die in 2 yrs.  But those thoughts have floated in my head and it has made me look at life and my family differently these past 2 weeks.  I have chosen to really make family time special even when all I wanted to do was be alone and lie in bed.  Even when I did not feel well I made sure we went sled shopping on my B-day so we could enjoy that evening sledding together the 4 of us.  I have forced myself to "have it together" in a sense around my kids as best as I can knowing that my little girl still has a hard time with me needing nurses to come into my home weekly and monthly to give me needles and help with TPN stuff.  I have recognized the different character issues/areas in my life that I need to work on as well.  Truly humbling and now I pray for the energy to do the hard work at learning how to manage my stress levels and allowing the Lord to refine my character to be more of his likeness.

This past week has been pretty wonderful.  No commitments, no gatherings, just the 4 of us and it's been good for us to have quality time together with much more peace in our home.  It's been a breath of much needed fresh air.  That said, I am little worried how it will go once my hubby is back to work full time and school and after school activities start up again (not that my kids have too much going on in the week). 

 My little girl though can be found at time to time with her head hung low or curled in a corner and saying she misses her grandpa who died before she turned 1.  I think it's her way of expressing all the grief she feels over missing our friends and life overseas, her grandpa and as she puts it "him not being able to see her grow up" and her struggling to see me still needing my needles and port. So I long to bring normalcy for her.

I am someone who feels stressed with a messy/cluttered home.  I am working at de-cluttering and wanting to take more steps in the New Year to be of a more minamilistic mindset.  To be honest I would far rather travel or create memories with my kids than to have stuff.  I am also realizing that I need to let go of my expectations and just BE.

And this past weekend as I asked the Lord what word He wants for me in 2019 I found myself on my knees as tears rolled down my cheeks.  I have been hearing the word "light" for weeks now.  A desire to be a light to my kids and have the light of Jesus flow out of me to them and thus to others.  To know He is my light in the darkness and to bring the light/love of Jesus to those walking in darkness.  But then I listened to a talk online from the IHOP OneThing2018 weekend.  Someone shared the verse from Isaiah 62:4-5. This person said, "Hephzibah the Lord delights in you!"  He challenged us to insert our name.  To soak in the knowledge that God delights in us as we are...no matter what we have or have not done.  I sat on my knees soaking in the knowledge that He delights in me.

So my word for 2019...DELIGHT.  And light is in that word.  I want to delight myself in The presence of Jesus.  I sat in the red chair in the corner of the living room before the rest woke up today journaling, reflecting and sitting with Jesus.  This I want to do more of.  I am So so hungry for more of Jesus and less of me.  I just get in the way afterall.  I am so craving the power and presence of the Holy Spirit in my life, family, church and community.  I also want to delight more in the knowledge that He Delights In Me! Zephaniah 3:17.

And then I want to delight more in my kids and hubby.  To stop the tasks I am doing and delight more in what it is they want to show me or tell me.  To be a more present mom.  Here's to 2019.