Firefighting, cancer and daily life

There are many things whirling through my head right now.  Narrowing down what I want to focus on is hard.  Phil is sleeping right now, he spends many hours sleeping right now.  He is currently going through radiation and chemo.  Life for Phil has slowed down since he started the treatment. Our day to day life is so different now, even from a couple of weeks ago.  My caregiver role changes on a daily basis.  The routine right now is pretty busy in a strange way.  My day starts at daybreak, he will have alarms that will be going off for different drugs, meals and appointments all day.  I try to get up and get my shower, spend some time on the computer and collect my thoughts.  Today it is writing in the blog.  His first alarm goes off at 6:30 to start the day with anti nausea meds to get ready for chemo, they go off at 7:30 for chemo, 8:00 for breakfast and more meds,  this goes on periodically all day until last call at 9:45 in the evening.  There are seizure meds, heart drugs, steroids, anti anxiety drugs and chemo drugs.  

To keep his stamina up there is good food involved, breakfast, lunch and dinner - this is a big change for me, Phil did all the cooking before we discovered his cancer.  I'm learning, the crock pot has been very helpful to me.  He also has snacks in between, and carries around a small lunch bag full of fruit and nuts with him wherever we go.  Breakfast alarm just went off - raisin bran with a banana and a glass of orange juice.  He will start with that, I'm in the process of making spinach scrambled eggs and he will drink a little coffee.  He quit drinking too much coffee because it made him jittery.  Then another round of drugs, seizure drugs this time.

It seems like a series of paperwork and phone calls are next while he has another nap after breakfast.  Today I'm finishing up our taxes, so that I can figure out what our insurance situation is with California Care.  I'm still applying for aid and trying to figure out the system for all of this.  One step at a time.  Doing this in between has been challenging, but is a necessity.  Doctors, appointments and radiation are a daily routine. 

On any given day it varies with how Phil does.  Sometimes he is so tired, we have to really work on getting him going.  With the brain being involved and the drugs there are many variables.  He bounces between depression and hopefulness.  The anxiety is horrible, calming him is a large part of the day.  We have found music right now to be the cure to a panic attack.  There is weakness in the left side of his body after the last surgery and I think the steroids are affecting his fine motor skills right now.  He was texting his friends, there has been a significant change, he seems to get frustrated with texting, right now there is not much texting at all.  I read to him from the computer, and show him photos, this seems to cheer him.  He goes back and forth about wanting to talk about the cancer and what he is going through.  When we run into someone at the grocery store or out in public, he experiences anxiety, he hates that people will feel sorry for him.  The emotions seem to be too much.  So everyday is different in our experience.

There are many good things plus we tell each other we love you 100's of times a day.  My daughters Nicole and Noelle, check in everyday in one way or another.  My sister has been a rock, checks on us and sends presents.  T-shirts to be exact, cheers ol Phil right up.  He is so popular at the cancer center and his t-shirts are the talk of the place, everyone checks to see what he is wearing.  The funding, prayers and love keep coming in and helps with us not have to worry about that aspect.  There are still bills that are not being paid.......but all in due time.  What is important is that medical help is being taken care of and keeping us sustained on a day to day basis keep going.  For that there is so much gratitude, I can not express.  Right now Phil takes 24/7 care, I'm so lucky to be able to care for him.  I want to be here for him, and am grateful for every moment that I get with him, the grateful that I am for that, can't be expressed.   

The wonderful part of each day, is the time that we get to spend together.  I stop everything at that point, these 3 or 4 hours are the highlight of each day.  There is usually a drive, sometimes we stop to stare at the ocean, we take short walks. We are trying to keep that left side of his body moving and strong.  I take photos and we talk, we talk about everything.  There are tears, laughs, memories and love.  Hugs, kisses and just loving each other and we both try to enjoy small beauties around us.  Some days we pick flowers to admire, some days dogs and always nature.  We discuss how we are changing, our hope that the cancer will go away and we discuss all the lovely things that are happening to us.  We both want to be happy, laugh and enjoy life too!  We count on the days that things will get better.

The mailbox is another happy place, there are cards, surprises and love that come from there.  The Go Fund Me always makes for gratitude and feeling loved.  The other day there were fireman from The Fayetteville Fire Dept. that donated and wrote words of encouragement, this provided him with such happiness, I can't express.  

Which takes me a little off point.  Phil was a fireman in 3 different cities,  He worked for the Eureka Springs Fire Dept, Fayetteville Fire Dept, and for the 188th Squadron in Fort Smith, Arkansas, in the Air National Guard.  I spent many hours worrying that he would be injured in a fire, or what he was having to go through.  I have lived through his flash backs from things he experienced, as a firefighter, and that was horrific.  Never did I think what I might have to fear was a cancer that would come from something he was exposed to as a firefighter.  It seems that is probably what caused the cancer.  Since he has been diagnosed I have been reading about cancer in firefighters, the incidences are quite high.  That being said, those men and women were his family, he loves them like family and it means the world to him when they show their love.  

Well I better quit procrastinating and get to my taxes......

Once again thank you for caring.......All my love -- Linda