Friday, September 19, 2014

Pitch Perfect Anyone?d

Pitch Perfect at 2:30 am? I guess! Day after chemo just plain sucks!! I love the month in between but why the day after has to kick my ass so hard is beyond me. Pain, insomnia, anxiety, you name it! So Pitch Perfect it is! I hope this is my one and only complaint this month but it isn't looking that way just yet.....tomorrow I meet with radiation for mapping to hopefully have radiation relieve some of my pain so we could could cut down on my pain meds since insurance is already giving me problems on my current dosage so let alone if we I need an increase. I also will meet with a "sleeve" expert. With the chest wall having some healing issues, my right arm is now experiencing lymphadema which is highly painful causing my arm to look bigger then then other and it is had to touch and caused my hand to tingle. There is no fix besides someone massaging the arm. Any takers? I'll take youWinking face next on Monday I will have another lovely thoracestesis as my right lung is almost completely filled again with fluid. So that is all within the next 5 days with most of this needing some down time to recover and doesn't look like that is going to happen. Just a little nerve wracking when chemo enough usually takes me about a week to recover for.  So am I scared and anxious? Yes.

To speak a little on the radiation, if you remember that was the plan back in July, but then was hospitalized the day before my appointment. They took me anyways for mapping, which is when they align your body and place permanent markers on your body so they radiate the same places every day. At that time they do a dry CT scan to make sure they are not radiating any organs. That was when they found the fluid in my lungs which meant the cancer had moved. The fluid removal trumped radiation and they felt it might alleviate some of the pain. It did not. So radiation is now back on the table. Because chemo and radiation can not overlap too much, it is important I sneak in the radiation within the month I'm off since they want to do 15 rounds. I'm not excited about this at all as this means 15 trips to the hospital, which isn't far, but when you go daily already too much, I just dread it....sitting in a gown, waiting my turn to be zapped, great company by the techs, but being zapped, burnt skin, extra soars... For me to do this, I'm putting a lot of stress into it to say if it does not give any relief, I will be very upset and it will not be a blog I want my grandmas to read Smiling face with open mouth

My arm, I have noticed since my chest wall had become either dried out from chemo or wet (sorry I don't know how else to explain it) when it isn't dry, there was a problem. Dr Phillips referred me to the wound center at the hospital and I learned it isn't infected on the outside but could be if we don't get the "yellow" skin off of it. To get that off, after a shower (only every other day -hey they made the rule) I will spray it with a medicated spray and then wipe as much of the yellow looking skin off. Since I don't have much feeling it isn't bad, but when I do hit a nervy spot-OUCH and it makes me want to pass out! So right now out insurance has denied the bandages we need to help heal the wound. I called today to pay for some while everyone argues it out and they are $11 / bandage and I use 3-4 a day! That is fun! So I paid for 30 in hopes by the end of that, we will have the insurance agreeing to the purpose. Either way, this had caused my lymph nodes in the right arm want to help with the drainage but because 19 were removed during surgery, I'm having a real hard time. So I have learned several massages to help the fluid pass to the next set of lymph nodes I think in the lung area. But that may or may not help the swelling that has already been caused in my arm. My right upper arm is hard as a rock and is causing my right fingers to tingle. Such an uncomfortable feeling and very painful. Also I'm not interested in it getting much bigger considering my left arm looks like a tree twig. A twig and a branch aren't that great of a match! 

Finally Monday, a thoracentesis has been scheduled to drain the fluid. This is the treatment that I have explained in the past being very uncomfortable. Last one they did give me valume and some drugs in my port right before and right after the procedure happened so I tolerated it better then before. So the plan is for me to again let the nurse know what I expect. After the test I will be required to stay in the hospital for 3 hours. Hour one a x-ray to check the lung and for me to sleep off all the drugs. Hour 2 is boring and I think I just ate pudding and stared at Facebook. The third hour a final x-ray to ensure the lung if back to normal and the hopefully home. The rest of the day is a bust as I can't do much. I'm tired and sore. So Wendy will plan to pick up the kids and stay with Ryan while Justin goes to soccer that night. Mom plans to join me for the long day at the hospital with me. 

This blog post does sound like I'm low on happy information, which I am. I will save a happy post for Tuesday or Wednesday next week when hopefully this is all behind me and I have hopefully a little more energy (although radiation is known to wipe out energy) so let's see. For now I ask that your prayers focus on all tests and procedures to go smoothly. After everything is complete, my focus request is for increased energy and a recharge on my feelings of everything. I'm far from giving up, but I do see myself slipping into that thought that we are doing all of this to prolong my life- which we are, but I need to concentrate and focus on prayers and hope that we find the right one for me. The one that may not seem to be a fix, but for me is THE ONE. Is the AMBER drug that will a make science magazines, will make that nasty doctor I saw while Dr. Phillips was vacation and in the hospital shake his head in disgust at me for not letting him be the one to help me, for Ellen and Good Morning America to call to find out my next plans in life are. Just so much that I'm smiling like it has actually happened. 

Okay it is now almost 4 am and I should try really hard to sleep through the last couple of hours of this movie.  Ryan will be up soon and as much as I say Mommy didn't' sleep, he doesn't seem to care.  I don't know why, but he doesn't.  Justin….well he gets up in time to eat and head off to school, so a lunch needs made and oh his breakfast too!  

Happy birthday to my dad this past Wednesday. We may or may not be having a surprised party hosted by Justin in dads basement tonight since Justin only has an half day of school today (Oh wait, no school lunch -Score!), he wanted to decorate the basement and make a cake to surprise Papa.  Prayers for my Grandma Freeland who had been in the hospital since Sunday. They are having a hard time regulating her medicine to help her 93 year old body working. It is frustrating for all of her children and for her to try something one day and it work and the next day it doesn't work. So prayers that this is figured out. Also for the siblings of my mom. Including my mom, to travel back and forth to the hospital to be with her to keep her company and help them feel secure that the right decisions are being made.

Happy Friday!



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