About a month ago I started to feel off. One particular day in August I was in so much pain it reminded me of the days in December last year, before I was diagnosed, where I would wrath in pain. I was in BC, catching up with old friends, but had to return back to where we were staying to rest. In this last month I have had a number of times where if I stand up too quick I feel like I will black out or pass out. Normally my blood pressure is low but at times it's been even lower than my normal low. I know I am dehydrated at times because I have not been drinking as much as I should. The issue is if I drink while I eat a meal, or even right before or after, it's like I flush my system and my food runs through me. So I don't end up drinking as much. This has not helped. And now I am taking 2 ounces of a supplement 4 times a day on top of drinking a certaian medication 3 times a day and then needing sip on water throughout the day.
I have had some similar pains or even sounds in my digestive system that have made me wonder if this cancer is back. So I called my oncologist and got in earlier to see him. The issue is that I have days where the runs keep coming and I am on the toilet like 20 times. This makes it hard to get the nutrients from the foods I eat. People ask if I have an appetite. I eat all the time. I eat because I have to eat. If I eat foods I want to eat it seems those are the ones that are harder on my digestive system. You know the ones that are maybe more flavorful, etc. I saw my oncologist on Monday. At this point he said the meds (5 different ones) I take are all he knows what to give me to help. He is referring me to a GI specialist. See I have no colon and I also have a shortened small intestine. I forget how much small intestine they took. Maybe like 30 cm? So I deal with short bowel syndrome as well. I currently weigh 81.6 lbs. At this point my oncologist, 2 different physio therapist and dietitian are concerned with my weight. It's been explained to me that since I don't have an omentum to protect my organs and have very little fat and muscle those organs are more exposed in a sense and that it's vital that I gain weight to protect those vital organs. Also due to the low weight and the fact that I am now in menopause, after my hysterectomy, I am at a higher percentage of losing bone density and getting complications from that like brittle bones, osteoporosis, etc . When I asked about if myself and my family need to get the flu shot that Dr. explained that if I got the flu it could be lethal for me since I can't afford to go days without eating, I can't afford to lose more weight. I don't have the fat stored on my body to protect me in times like that. The Dr. did mention perhaps needing to look at TPN again. Oh I was about to cry when he said that. TPN is a bag of nutrients that looks like white glue that would be given to me intravenously for like a week or whatever. This would mean time in the hospital and away from my family and needing to figure out childcare as my hubby works. I had TPN so much this spring, I HATE it. But if I can't figure out how to gain and keep weight on with food and physio then this will be my only option. Some times it can be given at home and into your stomach as you sleep but not sure that can happen for people like me who don't live in the city.
I do get a shot once a month that is supposed to help lesson the amount of bathroom trips. However I wasn't noticing that it made much difference these last 2 mths, even after we increased the dosage. Now I take a similar shot but 3 times a day as a trial for this week to see if it will help. If so then that monthly shot dosage will be increased again. The complications that could arise from these shots is gull stones. To be honest so far there hasn't been much improvement so I am not sure what we'll do if this doesn't work. When I had to be taught how to give myself the shots I was assigned a wonderful nurse. He name is Michelle. She looked liked and talked like my friend Michelle who is also a nurse but lives in AB. To be honest it felt like Jesus gave me a little gift of having my compassionate friend there with me explaining all about the needles and what I needed to do. Cancer Care has been so good to me. Most of the medical professionals I see are based in the same system. My dietitian is a Christian and she genuinely cares about me. She calls to check in on me and my weight. She researches, give me meal ideas, goes over my food journal, tries to encourage me and has been so compassionate with me on days when it's all so overwhelming and the tears start to well in my eyes.
So I was due for a 6 mth scan in December but due to my complaints the oncologist is going to order a scan for me. It's more a peace of mind for me but since things feel off I wanted to check. It's hard to know if my pains that keep me up at night are due to all the digestive issues or the uti that I had an the antibiotics I was on or due to the pains still from the major surgery I had. It's been 7 months from my last big surgery and 6 months from my final surgery. I have been told it could take a yr or even 2 to get back to "normal." The Dr. did tell me that the HIPEC (hot chemo) I had 7 mths ago could actually cause scarring in my intestines and that could cause pain and the runs too. I started a hormone replacement but since I started that I have had more insomnia in a way. So I am being referred to a different gyno at cancer care and I will also be referred to a pain specialist. This means more appointments and more trips into the city and more times where I need to figure out child care. Thankfully this past week two different friends offered to drive me in for my appointments and my friend looked after my kids for me. I have found help for my little girl two mornings a week for 4 hrs at a time. This has been helpful. I started a book study with a friend on stress and I am realizing that even though I get stressed when my house is a mess it is gonna have to be one of those things I let go of so that I don't feel so overwhelmed by all the medical stuff on top of food prep (I have to eat 6 to 8 meals a day with protein in each meal) and taking care of family and house and life in general.
My husband is enjoying his job. I appreciate that he's a man who works hard. He lives out Colossians 3:23, "Whatever you do, work at it with your whole being, for the Lord and not for men." We used to "work" together and have the same goal and vision. Now that he works and I am at home, I appreciate when he tells me about his day, what he's learning or doing so that I can feel connected in some way. I have been pondering what I want to do. As I see people I know, with cancer, dealing with re-occurrence or being given little time to live, I know that I am not guaranteed to have years yet. However, perhaps I will be. I need to take each day as a gift. A new day, given by the Lord, and one that is to be rejoiced in and given thanks for. Yet I also want to look ahead to the future. Eventually, after I feel healthier, and perhaps next year when my daughter starts kindergarten, I'd like to persue my Spiritual Direction course and further my training to become a Life coach. Yesterday someone came to me saying that for her work she was asked to find a prayer person, someone who would specifically pray for her on a regular basis. And when she asked I said, "Yes" because prayer is something I enjoy and am passionate about and it's something I can do "on my sick bed" too.
Through all of this health stuff I am thankful for the medical team I have around me, thankful I can do all of this in English and yet I am thankful for my surgeon in Turkey who did the drastic and aggressive surgery that he did back on Feb 28th of this year. I believe that added time to my life. That, along with the thousands of prayers that have been and are being sent up on my behalf. How humbling.
When you mentioned TPN I thought of what Keplyn called it - Milk and honey - because one bag was white and one a light yellow. It reminded me of God's promise of provision for the Israelites. When she couldn't eat, TPN was her only option - and God's provision.
ReplyDelete