Well, low and behold I was actually able to have treatment on Friday - Hazzah!!! My labs were fine on Wed and held till Fri and we are back on track. I did see a different onc as mine was on vacation, and that was actually a pretty interesting experience.
He asked me lots of questions, and I told him that I had been having some liver pain, as I had mentioned in my previous post. I told him I could feel it - didn't know if it was inflamed or what. He sent me for a sonogram to see if there was anything besides the obvious that was wrong. My chemistries came back 'abnormal' - which to be quite honest, frightened me, since the last time they were 'great'. There is another level they test, the ones they test on newborn babies against jaundice, and that was completely normal, which is good they say, cuz that would indicate liver failure. Oh joy. Just knowing they are looking at that now makes me a bit nervous. So the sonogram revealed that my liver is just 'enlarged'. Ok. Thank you? The doc said it didn't tell us anything we didn't already know. Good. And, how blessed am I that I get the test right then, and get the results from the doc on the phone as I'm in infusion. Very blessed to not do the waiting game. Thank you Lord.
Good news is that they are officially switching me to a day 1 day 15 schedule - again, thank you Lord. No more running to the lab twice a week playing the white blood cell count dance. Now I have treatment, go down for the Nulasta shot the next day - have a week off, then do it again. This means 2 Nulasta shots now, which, is good for the white blood cells, bad for the side effects. The bone pulse pain is so strange, it makes me wanna walk really slow, and carefully, like on egg shells or something. So weird. Those started for me last night after returning home from taking Britt to her dance, and has continued throughout the day today. Taking Aleve - which helps a little. OH - and they have taken me off anything containing acetaminophen - which means no more percocet, no more vicodin - too rough on my liver. The doc said that my liver was probably in the shape it's in because of everything that has been done to it - chemo, more chemo, 1 thereasphere, 2 quadrashpere, chemo, pain meds, now more chemo - seriously, can we give it a break already? I wish I knew what I could eat, ingest, read, massage, something to give it some relief. I lay in bed at night, and place my left hand over it - feeling it under my palm, and pray for healing. I pray for relief of pain, pray for the trust I need in the Lord that He will heal me. Please, heal me. Please.
Bone pain wasn't keeping me from church this morning, although it almost did. I drugged myself with what I could take, which was Aleve and one oxycodone and off we went. So glad I did. Got to see my girls in church with their new Bibles I bought them for Easter, and Britt and her sign language group signed Amazing Grace for the traditional service. Pretty cool. So proud. Then, promptly came home and my awesome hubby put me right into bed. I know I've talked about this bone pain before, these pain 'pulses' if you will, this time they were in my rib cage and my forehead. I climbed into bed, tuned into some sort of Waltons marathon, cuz I realized I never really remembered what that show was all about, and found it really only provided me with creepy in and out dreams of John Boy.
OH - and here's the best part - I forgot to mention this. First of all, I have never really bonded with my nutritionist at CTCA. She and I - well, let's just say our personalities are like oil and water - and anyone that knows me, knows that I'm not real good at hiding it when you annoy me. And she annoyed me - a lot. Well., I'm taking this class called Power Thoughts by Joyce Meyers which basically fixes your brain in certain situations - helps you create a more positive life for yourself through God's word instead of being negative, and judgemental, all those little nuggets we never like to admit to. Well, this weeks power thought was 'I am difficult to offend'. Do you know how hard this is???? I get offended all the time!!! Well, I was able to put this into action with my nutritionist - and let me tell you, it totally worked! Plus, we got to chit chatting and I found out that if I take a teaspoon of honey 15 min before and 15 min after chemo - then 6 hours later - no mouth sores. I did it and she was totally right - no mouth sores! In fact, the dry mouth is about 1/2 as bad as well. What a blessing. If I had continued my bitch face, I never would have been open to this information from her before - thank you Joyce Meyers!!!!
So I am looking forward to a normal week finally. My husband gets to work normal hours, I get to enjoy a normalesque week, and I hopefully heal. I did do something a little crazy. I entered the Ellen Degeneres 'change my life' portion of her show. I told my story (in like 1500 words - yikes) and asked for help in cooking and preparing healthy meals for me and my family on a budget. I just am having the hardest time forming these new habits - or making them stick. I've made small changes, little by little, but I know I need to do more. It's so hard when I'm so frickin tired all the time. I just wish I had someone to come in and show me how to do it. Showed me what to buy and a different way of thinking about food. I wish I had someone to do it for me - but that is never going to happen. I do have such an awesome community that cooks for me and my family on my treatment days - and what a blessing that it is - but I am not talking about that. I'm talking about me and what I am cooking for me and my family to keep them healthy and also help me fight this disease. Everything is so expensive, there has to be an answer somewhere. So - say a prayer for me on that front - cuz that would be wicked cool if her producers picked to help me. Plus, hello?? How cool would it be to meet Ellen Degeneres???
OK - I'm just going to bitch about one more side effect, and that's it I swear. I have neuropathy - bad. I never experienced this with any of the previous chemotherapy drugs I used - but this one is bad. It was just my fingertips at first that were numb, now it's the whole palm of my hand. Also, my legs started feeling numb this weekend. Not to the point that it is effecting my strength or walking or anything, just the nerves are effected to the point where they have a numbness to them. Both legs, the whole legs. Sucks. Totally sucks. I may be setting myself up here, but I am praying that after the third cycle (which ends after my next treatment) I get scanned and hopefully they tell me it's all gone and I can have a break. Please. I need a break.
OK - done. Now I need to get back to the trust part. Ironically enough, my devotion today was just about that - sometimes I think God has a sense of humor about this with me.
"Trust Me, and don't be afraid. Many things feel out of control. Your routines are not running smoothly. You tend to feel more secure when your life is predictable. Let Me lead you to the rock that is higher than you and your circumstances. Take refuge in the shelter of My wings, where you are absolutely secure.
When you are shaken out of your comfortable routines, grip My hand tightly and look for growth opportunities. Instead of bemoaning the loss of your comfort, accept the challenge of something new. I lead you on from glory to glory, making you fit for My kingdom. Say yes to the ways I work in your life. Trust Me, and don't be afraid."
I have to be honest, I read this and at first was VERY irritated at it. Growth opportunities??? I'm sorry, but I'm a little over the 'growth opportunities' already. Have I grown through this disease? Lord yes, and I am grateful - but I am tired. Then, I try to quiet my soul, and know, that anger is really just fear - and I need to turn my fear, into faith. If I get out of my head long enough and actually allow myself to be brought to the rock that is higher than my circumstances, then in fact, I do Trust Him, and I'm not afraid. Shit. Sometimes I hate it when He is always right.;-)
God Bless -
Dina
DINA'S BOOB BLOG - An online journal of my breast cancer experience.
Dina, I do know exactly what you mean about His word always being right! YOu and I have a stubborn streak! I then make use of my stubborness in my strength of faith. So, since I am older and have had longer to learn these lessons, I have finally understood the concept of giving in to the circumstance and letting God take the lead! What a difference it has made for me. I have not been through what you are going through, but I have experienced many life challenges. I must get out of my own way and subit my own will to the Lord and in His infinite wisdom, I have peace. I may not have all the solutions, but I do have the peace that comes from the Holy Spirit and that is worth everything to me. You are right about being slow to take offense. We must take that stance. Those around us, many times act or speak without forethought; it is human to do so. Just push it away and say," it is not mine; I will not pick it up." It is more about them, than about you. So don't let it in!!! That has saved my feelings so many times. YOu are always in my prayers and on my mind. I would love to do more for you. With Hermon's health issues cropping up at the most unexpected moments, I find it difficult to do much more than I am. I, too, am a big fan or Ellen & would love to see her step up and help you. Is there somewhere I can contact her and put in a good word? My mother and family were into healthy eatng all my life, but everything has changed so much, I probably would not be able to help much. We face some of the same delimmas when it comes to budgeting for groceries. We usually check out Albertson's for their seafood specials. I just add more veggies or rice, and use less meats & fish. We always spring for apples & bananas, & watch for specials on everything. But I am certain you do too. I am with you when it comes to being tired of trying to think of something to fix. And to be able to do it without too much fuss. I will look through my cookbooks and find some easy, healty recipes for you. Love you and your family so much, Sheila Adams
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