It’s been a mostly good week (with ups and downs). Despite that it makes common sense for there to be ups and downs, it is good to hear from the medical team that is perfectly normal and to expect it for another month or longer. Yes, we traveled to St Louis today. It was also Terri and my anniversary. Kai turned 10 years old yesterday (my second real trip out of the house). I got out of the house to visit some friends at work the day before, a stop over on our way to see my local oncologist. I won’t count doc visits or going to the store a trip out. But lets back up…

This post and the last one are more personal than helpful (sorry transplantees). After we got home and had the kids to ourselves, it was pure joy. The weekend went by too fast, partly because I had a bad day on one of them, but even then there was lots of hugs, touches, being close. I’m a physical person when you come right down to it and contact is essential. It makes me feel whole. Even when I feel like crap.

Monday – Have yet to find a routine cuz stuff came up, but I am really looking forward to a routine. Monday was busy. The morning was good because I am one of the things I am putting in my routine is to help get the kids up and off to school. Before this journey I left the house before them and was trying to get my own shit together in the morning. I like this much better. Then we saw friends at work and it also gave Terri a chance to get some work done, as I chatted it up. It was a purely social affair and it was really good to see them. Then off to my Doc. He is a good guy and got me through seven years of anxiety, gave me great advice, and is someone who gives it to you straight but with a gentleness that is comforting. Evenings are a blur, mostly because I am wiped out. One of the reasons I need a routine is to build my endurance.

Tuesday – Kai turns 10 (and its Day 60). Two great reasons to celebrate. We had been watching the whole Avengers series starting with the Incredible Hulk over the weekend. We finally got to Iron Man 2 Tuesday morning just in time to go to the theater to see #3. Kai had a great time, and hid in Terri’s shoulder when things got too intense. That kind and amount of violence would not have bothered me as a kid, but Kai is a healthier person and is more sensitive to that sort of thing. And THAT is a wonderful thing. Too much of a good thing had me resting the rest of the day, but I rallied to help cook dinner, take pictures for presents and cake. and help him sort through his new legos so he could build his creation. Mind you not what the directions said to do. Kai started following them, but then started making it his own. Makes a father proud!

Kai's 10 B-Day

Kai’s 10 B-Day

Wednesday – Kids off to school and out the door we went to make an 11am appointment in St Louis. NP Steph was great, because I had a lot of questions. So… I can now drive on my own, if I can do it. Freedom! And people of Columbia I won’t drive if I’m wiped out, so that leaves me the mornings for a while. She gave me a new med to take to sleep. Getting 5 hours a night for three weeks was getting to be a drag. Prednizone… I need it, but the side effects really suck. Not only does it keep me awake, but also makes it harder for my muscles to “engage”. On the plus side they are reducing the amount each day. The GVHD in my gut has stabilized, now it is time to see if it has learned to play nice. Throw the pixie dust and rap on the wood! There was a lot more discussed, and I don’t want to fill up this post with a list of minor issues. When I’m up to it, I plan to create a new page and discuss the past three months from a transplant perspective for those who want and need to know what it is really like (or was for me).

And now its time to enjoy my 14th anniversary with my Love. We’ll have to see what happens, and with that I bid you adieu.

(PS from Terri – I am liking this tagging on at the end. 🙂

Mark forgot to mention that he was also freed from having wear a mask anytime he leaves the house. Use some common sense, and wear it if necessary, i.e. tight quarters with lots of people, being around people that are sick… but in general, no mask! Yay! Fresh air! And I can remove chauffeur from my list of duties, unless needed of course. No mask, drive a car, I think Mark is going to like this freedom thing! 

also am trying to figure out this routine thing. I have to have a routine to help keep me sane. So far I have the first half hour of the day mapped out. Roll out of bed, drink coffee, read news on iPad. Tomorrow I am going to attempt to add, go to office and get work done! I miss actually going into work and sitting at my desk, and have actual interaction with my co-workers.

It was fun playing hookey for part of the day yesterday with Kai and Mark, and trying to make Kai’s birthday special.

Mixed in with today’s doctor’s visit was remembering that it is our anniversary and quietly enjoying that. OMG you guys, I have been married for 14 years! And all of you who have been married longer and are rolling your eyes can just let me have this moment, because 14 years is a frickin’ long time. Those years have just flown by. It sure feels like it was just last weekend that we were standing under the lighthouse, on that cliff laughing at the dive bombing pelicans and “Dangerous Condition” signs while swore forever to each other.

Am I babbling? I feel like I am starting to babble, so maybe I should shut up now.

One more thing to share… unfortunately this blog has started to get seriously spammed. And not in a PG kind of way either. We used to get one or two spam comments and they were easy to delete. Today we got 15. And like I said… they weren’t PG, I am not sure they were even R-rated. I don’t want to see it and we don’t want to subject you guys to it either. So, we have had to add comment moderation on the blog. All that means is that we have to “approve” comments before they will appear on a post. I hope this doesn’t deter anyone from posting comments because we really love reading them!

Okay, back to evening routine – time to get the kids to bed, and time for Mark and me to enjoy our evening and our anniversary 😉

7 Comments

  1. I was just wondering today how things were going and am so glad to see the post. Thanks for keeping us updated! Still praying for you Mark. I believe you will beat this.

    • We are moving step by step, day by day, one foot in front of the other. And yep, I know Mark will triumph over this. We keep saying… this is temporary, and there is a lot of life left to live!

  2. Congratulations on anniversary and homecoming!

  3. Sunbeam Magic

    AWWWW first of all HAPPY ANNIVERSARY! WOOT HOO 14 YEARS!!!!! Cheers to many many many many more years of bliss! Special pixie dust full of love and happinees for you both!!!

    And Happy Birthday to young Kai… what a precious picture! Gorgeous hair… wowser! we’re great Iron Man fans at our home, actually any Marvel heros … the Silver surfer was a special favorite! hehe

    Good luck with the routine Cierra/Terri… i actually giggled out loud with your comments about that! I’m a routine gal myself and know the feeling of not having one established…ugh! You go gril!

    As always, my love and prayers to you and yours…. Keep getting better and better Flynn/Mark!

    btw: have you drawn a silly mouth or such on those masks you wear outside… I can just see the looks you’ll get as you pass by LOL HUGGS

    • Sunbeam! I have missed your sunshineyness!!! Doesn’t the boy have the most beautiful hair??? I am so jealous it grows out of his head that color naturally. I hadn’t thought of drawing faces on the masks, but the next time we need one, it is going to have a great big grin on it!

  4. Linda Senenfelder

    Happy Birthdat to Kai. Happy 14 th. Anniversary to the two if you So glad to hear everything seems to be going so well. Like you said. Terry one day at a time. It will all work out. Much Love Pixie dust and knocking on wood plus lots of prayers comi g your way.