This week has been so very busy! Monday we had three- YES three doctor appointments, and radiation on top of that! Calli and I went by ourselves, but it was a good day. Her oncologist could not believe how well she has been doing. She is walking stronger each week, so she decreased the steroid that is poofing her face out a bit. She has maintained her weight, and her blood levels area ll exceptional, well, except her platelets which are pretty low- but that is normal -so they tell us :)
We had to postpone her rehab until the end of radiation, as our schedule was already booked, so really she has not had any at all, since she left the hospital, except for what Mike and I are doing with her here at home. We saw the PT Rehab doctor as well on Monday, and he has not seen her since she was discharged. Despite not having any physical therapy since then, she has gotten stronger! He said that he thinks she will need minimal physical therapy, just to help her balance and her gait get straight. He actually said, "You do not look like an oncology patient." Ha! He then took her down the hall to watch her walk, and the nurse, a stranger to us, says to me as she is tearing up, " She is really something, I just am amazed at her strength, I mean, she is on chemo, and radiation,and she is so strong...she is special." Yes she is, we already know this. God is sustaining her through it all.
So the thing about radiation is...it builds up in your system. Effects not seen the first few weeks are rising up right now. Last week, she had such bad burns on her skin, behind her ears, her forehead etc.... So during the weekend when she has off time, it usually will turn tan, and not stay red, but this week it got redder! I asked the radiation Oncologist on Monday if they strengthened the dose, and he replied, "No, Welcome to radiation, it has built up in her system and she will get worse, not better, radiation continues to build up and then presents it's effects much later." OK, think Chernobyl, Hiroshima,, OYE. I mean I KNEW all of this, but, well, I don't think about it everyday...at least I can't think about it everyday.
So, she has these horrible slits behind her ears- I mean, it is as if I took a straight razor and slit the crevice between her ear and her head. Both ears have slits in them, they are so painful. I thought, my gosh it looks like athlete's foot, but on her ear, could she have athlete's ear? Sounds funny, but it hurts.
I asked the radiation oncologist, and again he said, "This is from us, the radiation cut her skin, it will not get better, it will get worse." He proceeded to give me a bottle of aquaphor with lidocane in it. "Keep it moist, maybe it will help, but not likely."
Well jeez man, love your optimism! So we went home and lathered her up really well, and....it got worse. What is Aquaphor anyway? Petroleum Jelly- what?
So imagine that you go to the beach, lather yourself in some Vaseline and get burned, then lather yourself up after, and get burned the next day, and the next and the next. Vaseline may keep it moist, but my logical brain and the temperature of Calli's skin tells me it is also keeping in the heat!!! LORD HELP ME! HELP ME THINK! What can help her? They warned us not to put anything on her, or it could cause more burning.... what? You mean like the Vaseline you told me to put on her, and that I cannot wipe off, and as I am wiping it off it is hurting her???? Not to mention the lidocaine is not numbing her but burning her and stinging the skin! This does not make any sense to me at all. I need to pray and think and remember what I use for burns...what do I have?
I have Pot Marigold oil- Calendula, I have two bottles I just bought two months ago, knowing I probably will use it over the summer on Aidan. It is healing for burns, inflammation, cuts scrapes, bug bites etc! The photochemical in calendula oppose fungi, bacteria, viruses, and inflammation. They also excite white blood cells in the immune system to fight microbial invaders with a little more vigor!
I have Lavender oil-I wear it almost daily. Lavender has antiseptic and anti-inflammatory properties. It was used in hospitals during World War I to disinfect floors and walls. The Romans, used to bathe in it and believed that is restored and rejuvenated their skin.
It soothes and heals inflammation and burns, bug bites and skin eruptions or wounds, it repels bugs and bacteria! I never get bitten by those noseeums, because I always have lavender on!
I have Tea Tree oil, which I KNOW has proven to be antiviral, antibacterial, anti fungal, and it is also an antiseptic! It is know to cool and calm burns and cuts and wounds It has been proven to be active against staph infection and MRSA! It gets rid of lice, bugs, yeast, shingles, chicken pox, and ACNE!!!
OK, so I took copious amounts of the previous, and mixed it with Burt's bees Aloe & Buttermilk lotion, and Also CANUS Marigold body butter- two things I use a lot of and are whole milk based-and here we are, my homemade mix, I went against their rules, and I am lathering her up 4 or 5 times a day, before radiation, after radiation, when we get home, after her shower, before bed etc...and in only 3 days.....
it is COOLING her skin,
NUMBING her pain,
DRYING up the ACNE,
HEALING the cuts behind her ears,
and the leathery purplish-red burnt skin is turning brownish-red instead!
Can you see the big tongue sticking out of my mouth??? I mean really????
I went in and told the doctor what I did and guess what he said? "Well, if it works, then use it!"
IT is times like this when I need to go with my gut, it is OK to buck the system - so to speak- of what has always been done, or used. I am not one to sit back easy and do what I am told anyway. I am no doctor, or herbalist, but I know when something is just not working. It is a striving, a struggle that comes so easy- but it is a good one, one with smiles and inquiry, and searching what is pure and right and true. What have I got to loose?
So the insurance company decides to stop paying for her ZOFRAN, says it is too expensive. This is the anti-emetic, ya know the medicine that takes away her nausea, and makes her not throw-up. Really???
SO...being who I am- I called them today and informed them that
1) some person sitting in a suit behind a desk, WILL NOT make that decision for my daughter. No SIR!
2) You WILL NOT tell me no
3) you will not say that my daughter gets to throw up and be sick and suffer because you are unwilling to spend the money that we have been paying into your company for the last 14 years of her life and have never abused or over-used!
4) You will approve this medicine and you WILL pay for it!!!
I no longer care, (not that I ever really did), what people think of me. I would rather be remembered as the lioness mother who fought for her daughter's rights, and health, that constant irritation drip that is reminder her to drink, eat and move.....I would rather be her... that mom, that everyone is intimidated by...than be the passive - give-in and let everyone else walk all over us, and decide for us.
My mother is constantly reminding me that "Christians yield Lucy." Yes mother, they do, to the WILL OF GOD, not the will of man. People have always told me to hold back, quiet down, don't speak up so much, let them walk all over you, lie down and run over you.....that is what Christians are supposed to do. Really, last time I checked Christians are not called to be doormats, and the righteous are as bold as a lion! Yes, Yes, I know, you get more flies with honey, but I can be bold, and nice at the same time. Wise as a serpent, but harmless as a dove.
Why did God make me this way then? HE made me, formed me, my very personality, every inch of who I am, (not my sins, not my failure), but my boldness, my voice, the ache that has been inside of me since a child to do right,and good and see justice prevail...that is from HIM.
So, I don't worry, I be HAPPY, and I pray and then if I feel the urge I SPEAK! I am learning temperance. A wonderful spiritual father to me, told me once, that I cannot be like Barbaro the horse, and bust thru the gate before it opens, then I become dog food ;p
God is gonna work everything out for us....sometimes He gives us the bullhorn to get the job done.
I stepped off of my soapbox now :)
THIS IS WHO I AM FIGHTING FOR! She is precious, a GEM! She and I have so much fun and laugh so hard at each other and most moments when we are crying, we end up laughing!