Thursday, March 14, 2013

2 More Chemos

We have been home almost a week from Chemo and Phil is just starting to feel a bit better. This session was extra yucky because Phil is experiencing a new kind of pain in his chest that resembles something sitting on him. Drs have done many tests with no results. His heart is fine which is good. Me and drs have been brainstorming and have come to the conclusion that it is probably scar tissue and a nerve problem. All we can do is guess at this point. All throughout the chemo and days after the session was done he had to stay in hospital longer. Once again, nothing was solved. The awful thing about him staying longer was that the staff erased his pain management information (iv dilauded every 3 hrs) thinking he was going to be discharged home, but he ended up staying. For the 3 days extra that he stayed, they never allowed him IV dilauded, except for about 3 times after begging, crying and almost losing it completely. That was all of us- Phil, Kay and I. I have never seen Phil so angry, frustrated and at his wits end. It's not really worth getting into the details of how awful it was for him, but just know he's scarred and more then ever, can't believe he has to survive 2 more chemos.

At this point Phil is past saying, let's get this overwith- he is just exhausted beyond belief and sick of being in pain- once again, mystery pain. We are at the 8 month point and praying everyday for the strength to keep positive. And we do, as much as we can. The last vestiges of hair, like his eyebrows and eyelashes are almost gone and he is weaker then ever, even having a hard time walking without wobbling. I am sharing this because although it's great that the cancer is disappearing, he is in the worst shape he's ever been through this whole thing (except for the near death days) and he really still needs your prayers to keep strong. He is back on pain medication, which means he went through detox really for nothing, so instead of worrying about just how much he is taking- we are just set on keeping him as sane and comfortable as possible.

He will be getting a pet-scan next Tuesday, which we are hoping will reveal updated cancer results and more importantly what this new pain is being caused by. He can't keep taking so much medication, ignoring a big problem- although we both don't think we can't handle any more bad news. But we're just not thinking about it or worrying right now, because there is no point. Sometimes I just lie to myself that it is nothing at all, and just a simple nerve problem that will be fixed on it's own. I have to say, lying to oneself for self-preservation can work for short-term sanity.

Kay went home two days ago and she was of great help, even sleeping overnight twice with Phil and taking my place as bodyguard and fighter for him with the nurses and drs. I was able to stay home alone and sleep in my own bed- it's been SO LONG and I can't tell you how much that did for me. She helped with cleaning, and with cat stuff, rides, laundry, picking up stuff, you name it. I would like to mention that Hannah, mom and dad, Kay and all the extended family and close friends who support us emotionally and who answer all your questions on how we are doing - they need your prayers as much as we do. They are so tired and drained themselves, and in order to keep giving to us they need help from above. If there's one thing I can ask for in this email, it's for your prayers for our family. They have been going through this with us from the start and are experiencing their own burnout already. Think of them taking care of their own families but checking in everyday and just worrying about us all the time. How tiring. We couldn't get through without them, so please remember how much they also need your encouragement. Your embraces, and understanding will do wonders for their refreshment.

The cats are doing well, and I'm keeping the house disinfected daily. Neither of us have signs of ringworm which is great. It's hard to get if you are keeping extra clean, washing laundry with bleach and vacuuming constantly. In a few weeks Wolfie will be completely clear of it and I will be spending less energy cleaning, and more in taking care of myself and Phil. Wolfie and Minou are our babies and I will do anything for them. It is amazing how much they make Phil smile and laugh everyday. Nothing could make me happier. We saw a Too Cute episode while we were in hospital featuring Munchkin kittens, and Phil's set on getting one. If you don't know what a Munchkin is, it's a kitten with extra short legs. I think they're sad looking, but he's obsessed!....

Currently Phil is enjoying Friends and Seinfeld reruns and is hooked on cereal, cereal, cereal! If there's something you want to gift Phil it's cereal. He goes through about a box a day. He has it with either 1% or 2% milk. Here are his current favs:

-Banana Nut Crunch
-Honey Nut Chex
-Raisin Bran
-Frosted Mini Wheats
-Cinnamon Toast Crunch
-Lucky Charms
-Apple Cinnamon Cherrios
-Honey Bunches of Oats

TREATS (he eats these all day)
-Snickers Ice Cream Bars
-Coffee Ice Cream
-Caramel center Drumsticks
-Peanut Butter Cookies
-Macadamia Nut Cookies
-Cadbury Fruit and Nut Bar
-Aero is his favorite chocolate bar

-Dole fruit juices (strawberry, banana, peach type thing)
-Arizona Green Tea
-Lemonade Ice Tea

-Bananas, blueberries and raspberries - he's obsessed!!
-Lemons for alkaline water

-Pierogies w bacon and onion topped with cheddar cheese and sour cream
-Domino's Cheese Pizza and BBQ wings with bleu cheese dressing
-Any form of creamy pasta (I add mushrooms and broccoli for extra health)
-Caesar salad with lots of parm (amazing cause it's healthy)
-Macaroni and Cheese
-Grilled cheese with tomato

That's about it for now. I'm shooting to make the Saturday meeting, as it's been months since I've been there in person, and I truly need the encouragement. Phil is still too tired for company at this point but by next week I'm sure he'll be up for short spurts of company. We love you all and I'll keep in touch when we know more.

1 comment:

Sturge said...

Hollie, thank you for the update. That's about exactly how I would think you guys would be feeling, pretty much numb with just how unbelievably long and difficult this has been. You guys have a definition for 'endurance' all your own. You're both living examples of patience and dignity for all of us. Keep focused on the fact that every trial has an ending, and the end of this one is nearer than ever! Love you both xo, dad.