I’m back in the hospital, and if all goes as planned this will be the FINAL TIME for chemo!
I’ve been through / will go through several bags of chemo drugs; Rituxan, ifosfamide, etoposide, cytarabine and I’m also getting “premeds” which counter the bad effects of the chemo; Mesna (to protect my bladder) and special Dexemethesone eyedrops to protect my eyes.
So many drugs, so little time.
As generally happens, the first few days of a chemo admission feel pretty darned good; I’m getting fluids, drugs and food at regular intervals, and flying high from my ‘resting days’ when my blood counts and platelets have to reach a certain point before I’m even ALLOWED to return for more chemo. These days are as good as I ever feel during this whole cancer adventure.
After 2 or 3 days into a Chemo Admission, though, I’ll start feeling it all over; I’ll be exhausted, in pain in odd places and generally in a bad mood. (Just like usual…)
By the time I’m ready to be discharged, I’m a mess. Exhausted, dizzy, light headed and SO ready to get the hell out of Dodge! And of course, THAT’S when the exit process of this beaurocracy kicks into gear and we can add another couple of hours for a parade of ‘sign off’ folks to come and see me and see that I’m okay, and they can let me go.
I’ve only been in a day and already I’m anticipating my frustration at the exit process. Now THAT is some high dose Dex working right there.
I’ll be home in time for Thanks giving, but I definitely won’t be cooking. I’m basing the prediction on how I’ll be feeling on my reaction to my second chemo round (which is very similar to my current round, drug wise) and the fact that my last day here (Tuesday) I’ll be getting an interthecal, and we KNOW how I love getting that tiny needle up my spine to delivery MORE chemo. (That generally sets me back for more than a day, I’m supposed to lay flat on my back to avoid spinal headaches.)
Max comes home on Wednesday and will be having early dinner on Thursday with his oldest friend and their family, then he’ll return chez Landy-Modesitt for an evening Thanksgiving dinner with us. This is new for us, usually we eat mid-afternoon, but we’re changing it up this year.
Andy’s the chef, and since I’m in the hospital they’ll be the head shopper and planner, too. Andy is a night owl, and likes to go to bed rather late and get up even later, so it seems like a recipe for disaster to tell them, “Thou SHALT get the turkey in the oven by 10am…) because, really, IS that a rule?
I’ll help as I can, mainly by convincing Andy that buying ready-made foods is ABSOLUTELY EXCELLENT! There’s no need to mash potatoes, make gravy, or make desserts when so many excellent options are available. Yes, I have a stable of dishes that I make each year, and I’ll make them again next year, but this year we’ll have a very special menu for the family dealing with chemo and mourning.
I think we’re all a bit scared about how rough this Thanksgiving will be.
It’s only taken me over six admissions to hit upon a recipe for a much more positive experience; this time I brought my own pillow and quilt, and THIS has allowed me to have one of the better night’s sleep at St. John’s. The thin cotton blankets they use here are SO puny, even stacking several of them up means a lot of fussing and rearranging. My good ol’ target quilt works beautifully and STAYS PUT for a nice night’s sleep.
Oh, and my OWN GOWN! I’ve foresworn the hospital gown, I have a gown of my own I’ve altered to allow very easy access to my port, and it’s working great! The nurses all know me quite well now, and they’re happy to let me wear a night gown that doesn’t do double duty as a pup tent.
And pillows? I need my pillow from home, and I have it now, and I’m happy. And I didn’t even make Kathleen drive 25 miles out of her way to go get it…
Later today I’m going to have Andy help me rearrange my room (they’re SO used to me doing this at the hospital now, but – honestly – I do have better ideas for how to make the room flow and give the nurses more space to do their work!)
It sounds like you’ve got this visit thing nailed. Maybe you can get a job consulting on room layout when you’re feeling better? You can work up a questionnaire for the nurses to fill out about how your room design works for them and use it to develop a second (or would it be a 7th?) career.
Meanwhile I’m spinning that prayer wheel for you with love and smiles.
I was just thinking about you. I’m so happy to see you’ve posted. Wishing you all the best.
Keep on keeping on. Everyone is pulling for you. I’m across the river holding good energy and light for you.
One of the BEST things we’ve done is get our turkey from Whole Foods. No getting up at 0dark30 to get it in, worry if it’s done yet, etc. Theyre good, done well, and save your energy!
SO glad that your last round will get you out for Thanksgiving and being with those you love. Will be thinking of you, and giving thanks that you’re in the world
May you not have cause again to utilize the amazing skills you’ve earned about gaining relative comfort in a hospital environment. I’ll be thinking of you all on Thursday.
You are amazing. What a tough time. I love your honesty and appreciate your upbeat attitude — when it is there — and your frustration and grief — when that it what you are going through. I wish I lived near you ( actually if you lived near me as it is warmer in California) so I could be part of your brigade.takecare. Sleep lots. Laugh when you can. Pet animals.
It is so good to hear your voice again! And… You’ve got this. Warm wishes and prayers for a beautiful Thanksgiving at home with your sweet family.
I am so glad you have the comforts of home
You so totally rock.
Annie,
I hope this week is as gentle to you as is possible. Glad you and Andy and Max will have your own Thanksgiving, together. I’m sending positive energy your way in hopes that you will feel like celebrating.
You are a true warrior — an inspiration.
We love you very much.
Annie, what a voice you have.❤️ And teaching us all how to make it better rather than accepting what is. This Thanksgiving I am so thankful for you and your family. Love you a ton hon. ♀️♀️❤️
Like I said before – just “Do YOU!” All of you will find your own way through this time which must certainly feel like a surreal nightmare to each of you. It sounds like Andy is trying hard to fill your shoes. I think you’re right on the mark with order-in whatever can be ordered, and tell her what a fantastic job she’s already done!! I know you have already done that probably a dozen or so times. So glad to hear from you again. We’re all still right here.
I’ m so happy you have brought a bit of home with you!
That is healing in itself ! I love your take charge attitude in rearranging your room, do what you need to make this place comfortable for you.
I hope you and your family will lean on warm memories this week❤️
perhaps we need to put you in charge of hospital design.
Sending love and comfort, Annie. And such gratitude that you’re almost done with the chemo journey.
We are very glad you’ve got the blend of comfort items that work for You! (for M it’s her socks, her & foam earplugs! We both hope this stay goes quickly & easily for you.
Hoping the quiet means you’re continuing to use your strength to heal. Sending love and healing
I am also thinking of you and hoping your December is ok. Hugs.
Sending you light. I’m so glad that you are recovering. Please be kind to yourself. ~ksp