Titrate to Comfort – it’s likely you’ve never heard those words before. What they mean, semantically, is “raise the dose of pain meds until the patient is comfortable.” Makes perfect sense. Just what you’d want, right? However, what it means emotionally is much more difficult to accept. Titrate to comfort. Those are the standing orders we have from Dr. Loukas.
Maggie is doing ok. Keeping food down continues to be a real challenge. There seems to be neither rhyme nor reason as to why. We take the nausea meds. And while she spends a majority of the time nauseated, she looses her lunch with little but a few seconds warning. It’s very strange. Sometimes it happens without any nausea. Belch, and there it is. We have our roles down pretty clearly at this point. She throws up while I get napkins and a glass of water. My job is to scratch her back while she wretches, place the napkins near her hands and NOT to flush the toilet. While you’d think (at least I did) new toilet water would be a good thing, the overwhelming smell of the little bleach cleaning disk that we put in the reservoir of the toilet to prevent the rings makes matters worse. So no flushy the toilet!
She sleeps a lot. We’ve wondered if it’s the pain killer that’s weighing her down or something else, something worse. She’s on 1.3 milligrams of dilaudid per hour now. A nurse told us stories of a patient that was getting some ridiculous amount per hour, like 850 milligrams per hour so, in comparison, what we got ain’t much. But that patient was, well, let’s just say that dose was for a limited time.
We now have this new home health thing going on. It’s all quite surreal. We have little bags of medicine that we keep in the fridge, bags like the ones that belong in the hospital, not in our fridge by the wilted lettuce. Maggie carries around this pump that’s connected to her port-a-cath, doling out the latest dose of pain killer. Ever so often it beeps, signaling that it’s out of fluid. That’s my cue to go to work. I wash my hands and go about changing out the bag, including disconnecting the old bag, injecting into her IV line some fluids (a simple 0.9% saline to flush the line out), connecting up the new bag to a new line, hooking it up to the pump, and then starting the whole program over again. All complete with the requisite wiping of the stinky alcohol wipes on everything, just to keep the baddies out of Maggie’s blood. It’s just bizarre.
She always perks up with people around. It wears her down but she enjoys the company. It’s tough because she doesn’t feel like having company but being around people just puts a sparkle in her eyes and revs up her spirit. It’s fascinating to watch, really. And oh how I love to see her come back to life. Maggie just loves people. It’s never been so obvious as it is now.
We ramped up the pain meds obviously because she was hurting again. But why? The list of suspects (along with my commentary) is:
* The tumors are growing – that’s bad, mmm-kay
* All the recent driving has jostled her innards about – sad
* She’s taken to whining more lately – unlikely
* Building up a tolerance to dilaudid – is this possible?
* The tumors are inflamed and are beginning to die – Zee Gold Star
Dr. Kurzrock said that she thought that it’d take about two weeks before the tumors would start to shrink. That puts us around next Monday, kind of. Maggie, of course, will know before any scans can tell us anything. So we have a plan. Next Monday we are going to lower the pain meds down just a little and see what happens. Maybe, just maybe, we won’t need this stupid pump any more soon. Thanksgiving, anyone?
Throwing up is our bodies natural defense against toxins. Two weeks was about how long it took me to feel better once I stopped oxaliplatin. Stay hydrated; try to get some fresh air and my cousin swears peppermint tea stops nausea.
Hold Fast, You are in a lot of family prayers this Thanksgiving.
Don MacLeod
I smile for the love and humor you share – I cry for the pain and suffering you are experiencing. “You don’t know me” but my daughter Dawn is a friend of Nurse Jolie. Dawn led me to this site and I’m a dedicated follower. My thoughts and prayers are always with you.
Priscilla Hellums
I was a little preocupied because I (we?) did not hear from you since the 21st. I have this internal need to know how Maggie is doing. I love both of you even though I do not know you. You both will be rewarded. Keep the faith kids. Olivia H.
PS Love your tenderness.
Let Maggie know that we have been checking daily and not stopped thinking of both of you. Thank you for taking the time to communicate with us when you have so much going on. Give her my love. Michelle
I realize the word “happy” may not be in your vocabulary these days, but I’m wishing you a happy Thanksgiving none the less. God bless
I read all of your comments too. 🙂
Happy is not gone!!! Don’t worry to much about us. We still have each other, our fabulous families and our wonderful friends (and some amazing strangers!). We are happier than most and more blessed than we deserve. We have a lot to be thankful for this year… and we are thankful and happy. Happy Thanksgiving Y’all!!
We just wanted to say Happy Thanksgiving to you guys. You are in our thoughts and prayers often.
Me too. Just wanted to say Happy Thanksgiving. I think everyone has something to be very grateful for. Maggie, sorry I’m going to miss your wine party for the first time this year. BOO! I hadn’t read your blog all month and sorry I missed you while you were here in Houston. Hopefully, I’ll have a chance to see you next time.
Maggie,
Not a day go’s by I don’t think of you!I don’t think there is a word that can express you as a human being………..and Chris…..same with you. We all have learned something from your both that no book could ever teach us!
Bonnie
Maggie as always my thoughts and prayers go to you and Chris. I love your amazing spirit and strength. God Bless You and Happy Thanksgiving!
you are both such strong, inspiring human beings!! i am thankful to know both of you! have a happy thanksgiving!!! xoxo
My wife has stage 4 colon cancer and is 44 years old. Recently she was put on a Fetynal pain patch that lasts for 3 days and comes in different strengths. She has back discomfort from some spreading in her abdomen. Perhaps you could ask about the patch instead of the pump. Just an idea.
Stay strong, I know what you are going through.
Maggie and Chris,
Thinking and sending you prayers from across the sea. You both are amazing and I’m thankful to have you as friends. Best wishes this holiday season.
~Lisa
Much love!
I know it’s a day late, but I wasn’t on my computer yesterday. I just wanted to wish you both a Happy Thanksgiving. This should give you a a good laugh!
http://www.teamjuicyracing.com/sounds/thanksgivingsong.mp3
Happy Thanksgiving –
late as usual but still not quite fashionable –
Thinking of y’all lots –
Family in New Orleans and Danielle send their thoughts, prayers; sister Rose sends a little good voodoo y’all’s way as well –
Maggie, just wanted to let you know that Ms. Herrera is a co-worker of mine from the state agency where I work. Her whole church is praying for you.
Much Love, Mom
I check the blog everyday, but haven’t in a few figuring that you guys were out of town. I am so thankful to know such wonderful, loving people. Chris, maybe you can humor Maggie by wearing a sexy nurse outfit when you’re doing your nursing duties. 🙂 Maggie, I hope you’re feeling better and better everyday. I wouldn’t read too much into the nausea, because the pain meds do that, plus the anti-nausea can do that, and then all the other stuff in your body. We’re sending lots of love and strength to you both!