Wanna hear some great news?
Johnny slept through the night last night. No sewer screaming, no dry heaves, no nightmares. Just a good night's sleep while attached to his 5-FU pump. I didn't even say a single "FU" last night because I was sound asleep next to The Fighting Toad. Last time I had to sleep on the floor for the "bad night" because: (1) I feared for my life due to his monster battles, and (2) Johnny was so uncomfortable with the pump attached, I just needed to give him all the room he needed. But not last night!
From now on I will tell every one I know about Emend, wonder drug that it is. I think the magic combination is the Emend, Zofran, Zantac and Lunesta. They take care of the three biggies that Johnny has to deal with -- nausea, heartburn, and inability to sleep.
He is still really sleepy today, and a little on the dizzy side. He has been up to eat his chicken noodle soup and mashed potatoes. It is so hard to get fluids down because they can't be cold. He still has the cold sensitivity thing going on and warm liquids just don't satisfy his thirst like an ice cold glass of water would. Every hour or so I make him drink about 4 ounces, which is manageable.
He also has developed pain in his jaws when he takes the first bite of something after not eating for a while. Pretty weird. There is a syndrome called "First Bite Syndrome", but it is usually found in people that have experienced surgery in the salivary gland region of the neck. I think it is in relationship to the drug that causes the cold sensitivity. Who knows. It only happens on the first bite and then goes away for the rest of the meal, so it isn't too bad for him. Just really weird.
He will probably just sleep the majority of today and tomorrow he will start to move around a bit. I think by the weekend he will have this round of chemo licked. We feel much more powerful this time than after the last round. Knowing we have a good combination for keeping the nausea under control is incredibly comforting. So, BRING IT! We can take it.
Thank from the heart of our bottoms! (My new favorite saying.)
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OMG! He has First Bite Syndrome! That is just completely insane. My ENT said mine was from the surgery obviously and should be gone in two years or so...that was back in 2001. Here I am, almost 8 years later and it is worse than ever. I am glad his is just the first bite. That is just nuts he has it. Other than those of us who have had our necks sliced open I never knew anyone else to have it. Just this week I decided to try chewing mild gum before I eat, just to get the glands sort of working before I take a bite of any real food. The glands kick into overdrive and ouch!
ReplyDeleteAgain, that is just crazy to me. If Johnny ends up with labrynthitis (my other odd illness back in the day) somewhere down the line then I know we have a God just messing with the two of us. : )
Last night at MIL and FIL's we were talking about family plans and our whole discussion revolves around Johnny's good weeks and "chemo" weeks. I am so glad the "chemo" weeks are just a bit better. One week at a time my dear!
Still clicking and praying!
Molly
Pam,
ReplyDeleteMy mom is still dealing with surgeries from breast cancer that was diagnosised March of 2008. She recently spoke at the Relay for Life. In her speech, she kept talking about how she had to find a blessing each day. Driving to chemo one day, she heard a story on the radio.
There was a blind elderly lady with three sons. The sons got together and decided to get their mother some gifts that would make her life easier.
The first son got her a nicer house. The second son got her a car with a chauffer and the third son got her a parrot that could recite the entire Bible.
After a while, she got her sons back together. She thanked the first son for the house, but told him it was too big and she only stays in one room. She thanked the second son, but told him that she doesn't go anywhere and the chauffer is mean. She looked at the third son and said, "I really loved your gift. It was the best chicken I've ever had!"
Find the blessing each day, they are there!
Continually praying for Johnny and your family!
Sara
Hi Pam, this is the first I have heard about Johnny's cancer! I am so sorry to hear about this.....the Brawley family just can't get a break I swear! Well, I know you will fight this and BEAT it together. I know you have a huge support network of family & friends behind you, but please let me know if you need anything...errands, grocery shopping, help with the kids...I am home during the day and can run around for you :) You will all be in our prayers and we will be clicking away to help as well.
ReplyDeletexoxoxoxo,
~Lori Baxter