An update on Me

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.