Quick update:  I decided to stop taking TPN.  For the past year or more it has made me feel sick.  My Dr. informed me that my body isn't really taking in the calories from the tpn anyways.  Instead I will be giving myself hydration bags regularly so I don't get dehydrated.  I feel much better this way and less like I am gonna throw up.

I wish I had something inspirational to share but I don't.  I find myself limited with being unable to drive due to the meds I am on.  Because of the liver drain coming out of me I can't bundle up and go play in the snow with my youngest.  It's been hard.  

I am so thankful for the meals that get brought, the people willing to take my kids for playdates so I can nap, the people who pitched in so I could have someone clean the house once a week too.  

Early Christmas

 I know it's been awhile since I last posted.  Not much has changed. I daily deal with nausea to the point of throwing up at times.  Lately that seems to happen after I take one of my pain meds so that's a bit frustrating as the pain in my gallbladder area has been bugging me the past 2-3 days.  

Many people have stopped by to say hi, or I figure it's so they can say, "good-bye" in their own way.  I had to start canceling some of these appointments as I just do not have the capacity for them or in some cases medical issues came up with my bile drain being clogged and the bandages needed to be changed at the same time.  I am really hoping the issue with my drain will figure itself out so I don't have to go back to the hospital for a "drain exchange".  I really don't think I could handle more time at the hospital.  I have been sleeping a lot lately.  Perhaps it's the increase in meds they are giving me or it's my way of fighting the nausea.  It's been hard for the kids and my husband to see me go downhill a bit.  Thankfully today I had enough energy to have a visit with Bible School friends whom we have not seen in many years.  The husband was also in our wedding party.  And I got to meet my cousin's new baby. But now I pray I can sleep well as I am tired.  My daughter commented on how so many people come and then there isn't a lot of time for our family.  Don't get me wrong I love my friends and am thankful for them and glad if I am well enough for a visit.  But her words today made me want to guard our family time even more.  I find I have better energy when she's at school so that isn't great.  I am thankful for our family time tonight and for tomorrow being a day where I don't have anything up.  

We have no idea how long I have.  So tonight we decided to put up our Christmas tree early.  We don't have Christmas gifts bought but we did get them new ornaments for our family ornament tradition.  I love hearing the kids comment how they love that tradition.  Isaiah got a golf cart ornament in memory of his fist job this summer being the cart sanitizer boy at the golf course.  Kayra got one of a girl doing a cartwheel because she loves to do cartwheels and likes gymnastics.  We also got them a special family one with pictures from the photo shoot we had a few weeks ago.  Then after we watched a Christmas movie.  I know it hasn't even snowed yet but there is something refershing about the Christmas season.

Thank you for all your words of encouragement, prayers, meals, support and unique gifts for our family.  I don't know how people without a community around them survive something like this.  And when I am just too tired I feel like I am Moses sitting on the rock and Hur and Aaron are holding up  Moses' hands Exodus 17:2.  Thank you for standing on the side of me and helping me.  Those prayers give me the strength I need to get through each day.  

Reoccurrence

 Cancer sucks!  We moved back over 4 yrs ago because we wanted to help the kids get settled and adjusted to life in Canada incase the cancer returned.  2 weeks ago I learned that my cancer has indeed returned. I had been in the ER and then admitted due to looking like a yellow Crayon as there appeared to be an issue with my liver. To be honest we are not surprised but we were in a bit of a shock when we first learned the news.  The biliary duct area has a tumor that is growing.  It appears there are also tumors around the  kidney and the duodenum as well.  The scar tissue we thought was an issue could be scar tissue or it could also be reoccurrence.  Surgery really wasn't an option.  There was too much risk for complications and shortening the life I already have and I wasn't eligible for another HIPEC. And we also know that Goblet Cell Carcinoma doesn't respond well to systemic chemo.  I had many doctors consult over my case and the top liver doctor in our province also processing with me.  The prognosis isn't good.  I wanted to get home as soon as I could to my family and finally after 2 weeks in the hospital, having a bile drain inserted and a duodenum stent put in as well, I was able to come home.  

I have been home for a week! It has felt so good to see my family.  My parents and my sister and her hubby were out helping out with the kids and the house.  They were happy to be able to see me too.  They took turns driving me to a nearby town to receive IV antibiotics (Today was my last day PTL), my sister helped me shower, my mom helped keep the house cleaned and helped cook me a scrambled egg daily.  I can't eat much but I am slowly trying.  I am told the cancer is basically stealing all the calories from my TPN so any extra food I can eat is good.  After throwing up for almost a month and keeping very little down I am going slow with food intake and can only eat things well chewed, pureed or liquid.

It was so good to see my husband and my kids.  Man I missed them.  It's amazing how having showers and being with your loved ones can help perk a person up.  It has been hard on the kids to process.  We just put up a hospital bed in my room.  I don't need it now but we know it will eventually come to it and this way we won't have to wait for it.  Plus I find the nausea relentless at night so sleeping more upright in that bed will be helpful.  Seeing the hospital bed, and the bile drain bag full of gunk are just some hard reminders for the kids of how sick I am.  I am so thankful for all the people who have driven my kids to places (due to be heavily medicated I am advised not to drive), taken them for play dates or just dropped off little treats for them, etc to remind them that they are being prayed for and cared for.  

So many dear friends are wanting to stop by to say hi/good-bye. I love connecting with everyone.  At the same time I am needing to be careful with my energy and make sure that I still have energy left for my little family.

I'll try my best to keep updated on the blog.  My dream was to write my life story in a book.  Not sure if I will get to that before I die but at least this blog will have some of my story in it.  Thanks for journeying with us.

 

Horrible CT Scan Experience

 So I had my CT scan last week.  I had to stop eating food Tuesday night at 7 and go on a clear liquid diet that night till Thursday morning.  I stopped taking anything by mouth 4 hours prior to the scan.  Once I got to the hospital I was told to take a 10 mg pill that was supposed to be for nausea with the side effects of needing to run to the bathroom.  The technician told me it was supposed to drain things from my stomach into my intestines really fast.  I was then given a large class full of a liquid that tasted like the fake fruit punch juice boxes you get at the store.  I gagged my way through drinking it and informed her that I didn't think I could drink more.  She made me wait 5 minutes and said that I needed to drink a total of 3.5 glasses.  I was praying my way through it.  I only managed to drink half of the next glass before I started feeling the need to puke.  She gave me a puke bag and I asked her what would happen if I couldn't drink any more?  The drink was supposed to distend my bowels in hopes that they could get a clearer picture, looking for what might be causing what they think is a small bowel obstruction.  Well I couldn't drink more than half.  She then had me wait 15 more minutes.  I think after about 8 to 10 minutes I informed her that I was worried I was going to throw it all up.  She got me on the CT Scan table, hooked me up to the tubes through my port and after making sure everything was in working order I sat up and threw up.  I threw it all up!  This meant what was needed to get to my bowels did not get there.  I was disappointed but honestly felt much better getting that out.  They did the scan anyways.  I received a call on Monday that the scan shows my gallbladder is distended but they don't know why.  Is it something benign?  Is it stones?  Is it scar tissue?  Is it reoccurrence?  My oncologist just said they do not know.  

So now what?  My oncologist has ordered another special MRI to get a good look at the ducts and my gallbladder and liver.  I feel frustrated that no one will open me up to really see what's happening.  I am tired of the pain.  I am exhausted from the wait and he unknowns and I worry that I will have attacks when I am trying to camp or have fun family times.  I am not sure when the MRI will happen or what the action will be after that.  

All I can do it be thankful for the days I feel good and hold on tighter to Jesus on the days I am on the floor, or in bed, in pain.  I keep praying for answers and for Jesus to reveal to the doctors what's exactly going on inside my unique body.

I have a follow-up appointment with my HIPEC surgeon I was assigned 4 yrs ago.  Though he won't do surgery he said he'd chat with me on July 20th to see how I am feeling.  I also chat with my Liver specialist at the beginning of August.  My Liver Function blood work continues to rise.

Upcoming CT Scan

 I have been updating on FB and IG but since this blog is about my health journey I should write it hear too, though I will try to be quick. I found myself in the ER twice since the end of April. I couldn't figure out why I was having horrific pain, a bulging side that felt like my intestine was about to burst through and I was unable to really go to the bathroom and for someone with short gut syndrome, who takes many meds to slow things down, this was abnormal.  The pain was horrific and the 2nd time I was in the ER I was puking up bile (and my husband had to stop along the drive to empty my puke bowl into the ditch a couple of times on the 45 minute drive there and I continued to puke a few times in the hospital too.  This happened to be the night of Mother's Day.  Not a fun way to end a good day.  They swabbed me for Covid but since I didn't have symptoms they sent me upstairs and put me in a room with a roommate.  I swear I got this massive headache/migraine after the swab.  Hydromorphone wasn't even kicking the headache that they had to give me some other kind of medication as well for those next couple days I was in the hospital.  I had a CT scan and an x-ray.  There was talk of surgery but in the end this country hospital didn't feel they were the right place nor did they have surgeons who wanted to handle my complicated anatomy and medical situation/healthy history.  So I went home two days later.  

However, and hour before I was released I was informed that my swab results came back positive for Covid, which explained the massive headache, but I was in shock and pretty peeved actually.  I felt bad for the two roommates that I had because I really didn't know I had it. Once I got home I knew I needed to connect with my Spiritual Director and process with her and with Jesus the emotions I was wresting with.  I really think doing that helped me be in a better frame of mind for the next night when I found myself on the bathroom floor for most of the night.  

I was given medication to help with the nausea that I had been experiencing with I take my TPN and with these new issues in my body.  It was discovered that I have a number of gallstones and a narrowing bile duct so the gallstones can't pass through easily, my gallbladder is really low and basically on or really close to my bladder. My stomach is lower than it should be and the part that empties into the small intestine is collapsing so food is struggling to process through.  I also have a hernia in my diaphragm.  Wow, all of that and the doctors were unsure what was the actual cause of my symptoms.  I feel like I have been ping ponged in the last month to various different doctors from liver specialists, to surgeons to my oncologist, GP, and also  Anyways back to that medication.  When I took it once I was at home at night I found myself on the batthe HIPEC surgeon.  So I was released on a Tuesday and on Thursday night I found myself on the bahroom floor, nauseated, dizzy, and in horrific pain.  I was taking turns sitting on the toilet and throwing up and sleeping with my head on the rolls of toilet paper on the floor.  I cried out to Jesus to end the pain and my misery I was feeling.  I begged Him to just take me already. In fact the pain reminded me of when I was readmitted 4 yrs ago in the hospital.  The point where the pain was so bad I didn't know if I'd make it through the night.  I tried to imagine Jesus laying on the floor with me.  I had hooked up to TPN so I wasn't sure if it was that or Covid affecting my digestive system.  My dietician things I actually had an adverse reaction to that medication so I have not tried it since.  Once I was able to unhook from my 8 hours of TPN I crawled into bed, put on the song "WAY MAKER" and sang the words quietly.  A peace washed over me and I was able to sleep for a couple of hours before it was time to get up with the kids.  

Since then I have lost about 10 lbs and I  had about 4 or 5 other attacks but not as severe to send me back to the ER.  I know that I need to walk, apply heat, lay on my left side, stop eating and just go on a liquid diet when I feel an attack coming on.  I find it can last anywhere from a couple of hours to about 24 hours. My body wants to curl in on itself from the pain. 

I was assigned a surgeon but he didn't really want to open me up for fear he would maybe make my short gut syndrome worse and leave me in more of a state where I was reliant on TPN to live and eat. Because I wondered if I was dealing with some sort of reoccurrence I wanted my HIPEC surgeon to be consulted.  I talked with a couple of times recently.  Due to Covid in our province he said I will not be able to have a surgery where they open me up and one that requires an extensive stay and that would be the case if I had HIPEC.  At this point he doesn't feel I am dealing with a reoccurrence.  He feels it's an issue of scar tissue or something causing a small bowel obstruction.  I know that unless they open me up and really look they can't fully tell me there is not re-occurrence.  He wanted to see if the surgeons that saw me when I was admitted through the ER over Mother's Day would be willing to open me up and at least clear away some scar tissue.  But she said she didn't feel comfortable.  

So non of these specialists want to open me up.  No one is really sure what's happening to me and why. So now I am going to have a CT scan on Thursday.  This a different one than I normally have.  This time, 2 days before (so Tuesday) I am allowed to eat but after 7 pm I have to stop eating.  Then on Wednesday I have to have a "liquid only" diet day.  Thursday I am to not eat or drink anything and I need to take special medication just before the scan to really clean me out.  This will be super uncomfortable.  But the hope is that if I a really cleaned out they will be able to see where these strictures or obstructions are happening.  To be honest at this point I am just hoping they find something if there is anything to find.  If they can find something on the scan they may be more willing to open me up and trying to "fix" something.  

I know something is wrong, When I have these attacks I struggle to function well through the pain.  I am thankful for this past week where I have had a few 'good' days and have even been able to help with yard work and yard projects.  

So if you happened to have read all of this please pray for my upcoming scan on Thursday.  And for favor with the doctors.  That God would reveal to them what is happening inside of me.  After all He knit me together in my Mother's womb and knows me so well.

A Kayak meets a Dam

I have had this song running through my head since Monday night.  Our friends lent us their kayaks and canoe for a couple of days.  We enjoyed exploring our river for the first time this way.  I will say it was really fun and I am already dreaming of the day we can own one of our own so we can use it more in spring.  We've had SO much rain that it was really interesting to see how the river kept rising over the 3 days that we had went on the river.  It's isn't a super long stretch that we can canoe on due to a dam that isn't too far up the river from us.  

My husband was in the canoe with my daughter.  I asked him to hold onto my phone as I figured it would be safer in a canoe than a kayak in case I fell in for some reason. My son and I were each in a kayak.  We went into a little area that was super full of algae.  It looked interesting so I figured I'd take a picture.  I mentioned that I wanted to take a picture and my husband said, "Memories are better.  Let's just enjoy this."  And I said, "Yes but a picture can jog a memory."  So he came close to my kayak and gave me my phone.  I snapped these pictures.  My husband told me to put my phone in my pocket but I tucked it into bra as I wasn't sure it I would fall out I wanted to make sure I wouldn't lose it or it wouldn't fall out of my pocket. 

Then we carried on to the main part of the river up to the dam.  See below.   My friend heard this story today and then sent me this picture.  I have never seen this sign before.  Maybe it was put up after my experience on Monday.😂  

So my husband and daughter were in the canoe and as they got close to the dam not only did they notice how high the river water was but my husband commented on how they were seeing fish trying to swim up the dam.  I couldn't see from where I was so I was a little impatient to try to see how big these fish were.  Turns out they were about 6 inches long. Well I guess I got too close with the kayak and the current and water flowing over the dam got me and took my kayak under.  Thankfully I was wearing a life jacket so my head didn't go fully under but I was soaked, my sandals went under the current and the kayak was water logged and stuck in the current.  Trev remained calm and encouraged me to swim hard and to the edge.  I managed to make my way to the edge and my son found my sandals as they were floating and tried hard to get the kayak out of the current.  We were worried it would take him under too. 

A couple of weeks ago I was telling my daughter about the dangers of having phones by baths as some have been electrocuted I forgot to mention it was when phones were charging.  Well she was crying and was worried that I was going to get electrocuted.   Trev eventually dropped my daughter off on the edge to stand by me.  He told my son to drop off his kayak at the edge.  I helped pull it up on the shore while he got into the canoe with Trev and together they would try to retrieve my kayak that was upright and unable to get free from the current.  Eventually they managed to get the handle and pull it towards our friends to drop it off.  Trev told me to carry my son's kayak on shore to our friends' place but I wasn't strong enough.  My daughter found someone to help me carry it while I was soaked and actually laughing about the whole thing.  My husband wanted to enjoy the memories but I am thankful for these pictures that will help jog our memories about this event.  

We got home and put my phone in a bag of rice for night and thankfully it survived the ordeal.  I haven't uploaded any of my pictures in the last 6 months onto my computer so I was worried I was gonna lose them.  

We had a little family meeting after and discussed the importance of life jackets and acknowledged how our family worked together in that little crisis.  Isolation and lockdowns and just some strong personalities in our little family means we don't always get along.  It was such a gift to be able to see how we banded together, listened to Trev's instructions and figure out how to rescue the one kayak and get the other one back as well.  All the while have some good laughs and new memories created.  Moral of the story:  ALWAYS WEAR A LIFE JACKET and DON'T GET TOO CLOSE TO THE DAM!

Graduation

Wow!  I am overcome with gratitude and a sense of accomplishment today.  This weekend was my last module class.  We moved back here 4 years ago because we weren't sure if the cancer would return.  We wanted to be near family and get the kids settled.  I used to tell people over the last 8 to 10 years that one day I'd love to be a Christian Counselor or a Spiritual Director.  I clearly remember the day two summers ago when I felt a blessing and release from the Lord to apply to the School of Spiritual Direction and to pursue this dream of mine.  It feels so serial to be alive and to have finished this program.  After these past 2 years I feel even more confident in the giftings that God has given me, the way that God has and is using the struggles I've endured, and the life lessons and experiences over my life to better equip others as I companion them on their own faith journeys.  What a humble, sacred blessing it is to be invited into the lives of people.  What a privilege it is to hear ones story and to help them see how Jesus is and has been at work in their lives.  They say "find a job you love and you'll never work a day in your life."  Well that's how I feel with Spiritual Direction.  This is what I feel I was made for and something I hope to spend the rest of my life doing.  

Though we didn't get to meet in person due to Covid restrictions I am so thankful for Zoom and the connectedness and sense of family that can still be felt over screens.  We grieved the fact that one of our classmates was unable to join us as he is currently not well and battling with Covid in the ICU.  Please pray for our friend Peter and that he will come through this.  

We had a beautiful time sharing affirmations with each other and also being commissioned by our teacher as we now have completed our 2 year program through Sustainable Faith which is the largest Spiritual Direction school in North America.  When I left my life overseas I found myself feeling pretty lonely.  I missed feeling spiritually connected with friends who I could share deeply with.  These dear classmates of mine became family.  They became a body of believers that I could share my tears of joy and sorrow with and they became cheerleaders and prayer warriors for me as well. With restrictions causing churches to stop meeting, or only having online services, these class times became like Church for me in a sense as well. I am thankful for their friendship and look forward to finding ways to stay connected in the future.  If you are on the lookout for a Spiritual Director I highly recommend any of these dear friends.  If you are curious about Spiritual Direction and want to learn more or have questions please don't be afraid to reach out to me.

I wish we could have been in person today to have our little commissioning service in person.  It would have been awesome to celebrate together face to face.  For now I will sit and marvel at the work God has done in my own life over these last two years. I sit in the gratitude I feel for this opportunity I had to learn and grow in my own walk with Jesus as well as learn and grow to be the Spiritual Director the Lord wants me to be.  All glory and praise goes to HIM!