Some people have been asking how I am doing. Well this week felt a little discouraging for me. Let me explain. I have a wonderful dietitian that seems to be going to bat for me all the time. She is always giving me samples to try of things that are supposed to help me gain weight. So far most seem to not be helping. She is talking to doctors on my behalf to see where the referral is at to see the GI specialist (as I have been waiting months for that) or to get needed blood work to see where my electrolytes are, or to see how my liver is functioning from all the meds it takes in, or to see if other vitamins and minerals are at the right levels or not. She had me take a few day food journal and punched it into a program. That said that based on the calories I eat I should be gaining weight. Since it doesn't appear I am (though I have not stepped on a scale in a few weeks) then it is most likely I am not absorbing all the nutrients and calories. This is a problem.
Today I found out that the GI never even got a referral for me. Like I said, I've been waiting for MONTHS! So she made sure that my oncologist nurse would send in another request this time marking "URGENT" on it. When I look at myself I don't feel like I'm urgent. And yet I am fully aware that there are many dropping like flies around me and sick at home with influenza, the flu or bad colds. Each of us in my family have sore throats right now but out of all of us I am managing to feel the best of them all PTL! However I am aware that if I were to get so sick where I couldn't eat or where I couldn't drink (I already drink so little because liquids make the chronic runs worse) that I could be super dehydrated or lose too much weight that I'd be in a serious condition. So I know that the fact that I am only 84ish lbs means I HAVE to gain wait and thus this is an urgent issue since all the meds I am on don't seem to be helping or watching what I do and don't eat doesn't even really help depending on the day. And I know that the best diet for me considering I had cancer is to eat protein, high fats and omit sugar and eat WHOLE FOODS. But usually fatty foods and whole foods run through me due to the fibre. So it's hard to not stress about food and wonder how my body will handle what I put into it.
So the suggestion is TPN. Check out this link to find out more of what that is. http://www.merckmanuals.com/en-ca/professional/nutritional-disorders/nutritional-support/total-parenteral-nutrition-tpn
So right now I will be getting some blood work taken on Monday. Once those results come back then I will talk to my pain doctor and my dietitian and wait to see the GI specialist. From there, if I go with TPN I will need to get a port inserted at the hospital and eventually can be at home and hooked up to TPN at night to hopefully help me gain some weight. Perhaps this would give me more energy too. I'm not sure how long this would be for maybe weeks or months?
Thinking about TPN brings back memories of me telling my daughter I was going for a check up and I'd be back only to find out my weight was down and I was back in the hospital for a week and then having the iv inserted in my neck. That was the only vein left that could handle that thick solution at the time while I was crying, knowing it would take a week again or more before I could head home to see my kids again. It's like PTSD in a way when I look back on this last yr. However, tonight my hubby said he had a different take on TPN because he views TPN as something that brings life back into me as last yr he saw me looking like I was almost on my death bed on a day that I was forced back into the hospital and back on TPN last March/April. I so so don't want to go down that route but if after the blood work results and my visit with the GI this is what is recommended I know I need to seriously consider it.
Feb 28th marks a yr from my Major Surgery. That is the surgery that took 8 hrs, many organs and that changed the course of our lives like we never imagined. On my appendix cancer fb site I asked if others struggled with weight gain and runs like I did and if others were on as many meds as I am. Though many deal with some of the same complications and side effects from surgery and HIPEC that I have not all of them are on as many meds as I am without much relief. Looks like I am unique in this in some ways. I get lonely and want to go to Bible Study or see friends but because it's at night I can't guarantee that I will be feeling well enough. This past Thursday I had to miss study again because I was in pain and my digestive system was not doing great to the point that all I could do was rest on the couch. So frustrating. And may be embarrassing to really talk about my issues but it's what I deal with on a daily basis so why hide it. Most days my energy levels are low and I am SO thankful for our amazing babysitter that takes care of my daughter 8 hrs a week so I can rest and get some stuff done.
I have greater respect for those who deal with chronic pain or chronic health issues. And yet even though I struggle I am thankful I am doing way better than I was a yr ago. I know the Lord is with me and He'll carry me.
I continue to wonder what the Lord has for me in this season. On Sunday my hubby preached in church. He did a great job by the way. And he mentioned that he's been able to walk with some people through the Steps to Freedom in Christ. And I realized that this is something I could do. Both of us have walked through the steps and both of us are trained in walking with others. So I told my pastor that if he ever knew of any females that would want to do the steps I'd be willing to walk them through them. That would be life giving for me. To come alongside others, pray for them and see them find freedom and inner healing. Once my daughter is in school in the fall I really do want to look into finishing my life coaching training. But until then I need to rest and try to get stronger. I am thankful that this week I have been able to have some visits with friends which helps me not feel so lonely and also gives me encouragement on this journey that I am on.
I am getting tired of the cold and long for Spring to come. But then the thought of yard work and planting a garden and taking care of it makes me tired just thinking of it. I certainly hope I'll have energy for all of that but at this point I I'm ok with not having to worry about our yard.
With the passing of Billy Graham this week I've reflected on how people knew Billy as someone who LOVED Jesus and who was bold in his faith. He was an evangelist. I've asked myself who is it that I want to be known as. I want to be known as someone who LOVES Jesus and LOVES others. Who loves to walk alongside others in their sorrows and valleys, who loves to help people find freedom and healing. Someone who loves to go to deep places with others and who longs to see her children walking with the Lord with a full assurance of HIS love for them. I want to be someone who is known as one who rejoices with others and who also points others to Jesus. My character continues to be a work in progress and I am so far from who I want to be. But thankfully I know that Lord is not finished with me yet.
Sure I am passionate right now about trying to eliminate toxins and chemicals from my home and our family's lifestyle. I long for my family to eat healthier (how I wish my one kid wasn't so picky but gotta trust they will grow out of it) and to make healthier lifestyle choices so that is something I thing about. But as a whole I want to make sure I spend my time and energy growing my walk with Jesus because I want that to be a legacy I leave behind for my kids.
As a side note: If you could please pray that the bad sore throats my hubby and son have and the cold my daughter has will stay away for me I'd appreciate that. We've been doing out best to keep sickness at bay but with so many ill at school it's hard for it to not get brought home. Thank you for all your prayers especially over this last yr.
Friday, 23 February 2018
Friday, 9 February 2018
Rest
These past few days I have so little energy. I feel like I could curl up in my bed and sleep for days. The exhaustion makes it hard to really be able to put a good effort into taking care of my family or myself for that matter.
But this morning my little girl was being looked after and I was able to have a long soak in the bath tube and rest. Then I sat down to journal. I wrote to God telling him how tired I was and how I needed His strength cause I felt like I had little of my own these days. I opened up my devotional, "Jesus Always" and this was today's reading:
He cares and it's in HIM that I will find the rest that I need.
But this morning my little girl was being looked after and I was able to have a long soak in the bath tube and rest. Then I sat down to journal. I wrote to God telling him how tired I was and how I needed His strength cause I felt like I had little of my own these days. I opened up my devotional, "Jesus Always" and this was today's reading:
Sunday, 4 February 2018
World Cancer Day
I have tears as I write. I know it's a miracle I am alive. I was told that this cancer, if it were to come back, would most likely come back in this first yr or two. So we've made it to yr 1 since diagnosis. My husband informed me that he wondered if he was gonna have to transport my body back home last spring. My little girl talks regularly about heaven and how she will never let go of my heart and how I will always be her mommy even if I go to heaven. My kids have had to process a lot in this last yr. I am so thankful Jesus has been walking with us so closely through it all. I am so blessed that we were able to gather with some family and friends on January 26th and celebrate 1 yr since diagnosis. I forgot to take pictures. It is my prayer that we'll have many more yrs to celebrate.
In the above video he says this: "When you die it doesn't mean you lose to cancer. You beat cancer by how you live, why you live and in the matter in which you live."
This man left a legacy and he had a platform in which he was noticed and could raise awareness for cancer and his fight against it. I don't have a platform but I can only hope and pray that through all of this the Lord will transform me into more of His likeness and that some how my kids and others around me will be encouraged to draw closer to Jesus through it all. I had and opportunity on the 30th of January to share my story at the local Morning Out For Mom's program. I shed some tears. And as I shared I told people that I have seen God's fingerprints all over my story, and especially this last yr. I encouraged them to each share a story of their own and how the Lord was with them even during something difficult or painful. Tears were shared and I believe we all left feeling encouraged.
Growing up one of my favorite verses was Hebrews
Hebrews 13:5-6 English Standard Version (ESV)
5 Keep your life free from love of money, and be content with what you have, for he has said, “I will never leave you nor forsake you.” 6 So we can confidently say,
“The Lord is my helper;
I will not fear;
what can man do to me?”
I will not fear;
what can man do to me?”
Another quote that Stuart Scott said that had me in tears was: "So live. Live! Fight like hell. And when you get too tired to fight then lay down and rest and let somebody else fight for you."
Rest. This is something I was talking to with a friend of mine this week as we Skyped. Cheryl has been an encouragement me me as she has been fighting her own cancer battle. She was diagnosed a few months before I was. She is a blessing and encouragement to me in how she is walking out her Faith, leaving a legacy behind for her kids, sharing her story, and leaning into JESUS. We talked about how they have a babysitter 4 days a week. How she is getting help with her kids and how that is enabling her time to REST, to write and to take care of Her. I am so thankful for our babysitter that we have 8 hrs a week. What a blessing. However I realized after my Skype that I need to rest more. I need to some how make time to get naps in more regularly. When I don't take care of me I become more stressed, short with my family, and unable to really feel like I can thrive. But I feel guilty asking for help. I feel guilty putting on the TV for my little girl so I can rest. I feel guilty having others take care of my kiddos when I feel it's something I should be able to do. I feel like, compared to a yr ago I am doing way better. In talking with one aunt today she used the word, "stable" to describe how she sees me. Yes I am stable I guess. Tests seem to show things are good but I am so so tired and weak. I wonder some times if I had adrenal fatigue or if my liver needs a good cleansing from all of the meds I have to take daily. When people ask how I am feeling I say, "Tired." I know it seems like I am on repeat when I say that but it's the easiest way to describe how I am doing without trying to sound like I am complaining.
My grandpa turns 98 tomorrow. He's my hero. He is a man who has been through A LOT but I have never heard him complain. When asked how he's doing he'll say, "Not too bad." And then I think of my father-in-law. He fought cancer off and on for the 10 yrs that I knew him. He also was known as a person who didn't complain. So I feel challenged. How I respond to my struggles is being watched and I need to lean in to Jesus for His strength so I can walk this road out with integrity, His strength, and joy. Last week I was telling someone that I have not blamed God at all through this or wondered WHY ME? However that same day we found out our closest neighbors from T, their only daughter finally got engaged and the wedding would be this summer or before summer. I was so sad. That is one wedding I really wanted to be at. $6,000 is just too much for our family to be able to afford to go this summer and I am not sure I'd be healthy enough to travel. But it made me so sad and I asked the "Why did we have to come back to Canada" question and "I wish that I didn't have this cancer". But I know I can get stuck in those thoughts so all I can do is take each day, find things to be thankful for and lean more into Jesus. He has a plan for me and for my family in all of this. I can't see what that is right now but perhaps it's not for me to know right now either.
We had the joy of having a friend who lived in T when we did come visit us this weekend. He lives in Texas now so he wanted to experience a Canadian Winter. Well he was able to come over a really COLD weekend. We had fun showing him ice castles, and going to a NHL game, etc. We were able to speak in Turkish a bit together. Able to talk about missing our other home and our community there. Able to relate to each other and he was able to relate to my kids about being a TCK (third culture kid). It was a blessing. But all the busyness made my body scream. While at the hockey game I spent most of the first period in and out of the washroom. My digestive system was not working well and my body was crashing. So today my everyone else went out for lunch and I got to stay home and sleep. I woke up feeling like I had more energy. I need to do this more. Taking care of me isn't something I can do easily when I am taking care of home and kids, etc.
And I also know that how I spend my time will be a legacy for my kids. I could spend it all on my phone or cleaning my home and making meals. Or I could spend it with them creating memories, and also spend it with Jesus knowing that when my kids see me in the Word, and praying I will be teaching them what it means/looks like to turn to Jesus. This is something I have been challenged with this weekend and something I want to do better with. To be wise where I invest my time and how I invest it (even with whom) so that I can be an example and testimony to my kids.
Can you please join me in praising Jesus for LIFE and also praying for REST and a renewal in my walk with Jesus. I long to commune with Him more, hear His voice more clearly and to be able to have my prayer life and devotional life revived and feel like I have the energy to spend with HIM like I used to. I miss being able to minister to other people rather than being in a state of needing to be encouraged, ministered to and helped. It's a humbling place to be in. And if you read this please let me know, thanks.
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