Thursday, August 2, 2018

around here

+++ i have a bad rash on my legs and my right arm which is now getting better, but has been painful all week. it makes it hard to walk when your knees hurt so bad. so i have been in bed a lot of the week. which sucks. working with my nurses to see if we need to add anything else into the mix or these are just the side effects we knew would come.

+++ i have been able to make two trips with barrett and malena (ones close to home as we don't want to travel very far these days) which has been good in the midst of everything else and before the side effects kicked in at the start of the week.

+++ fatigue is kicking my ass, talked to my nurse about that today too. not that i don't love naps, but i would love to be up more than i am down. so we will see  - it may just be the combination of going off of the antibiotics, the steroids, back on to the treatment drugs. but there are moments i can barely keep my eyes open and so that also added to me being in bed much of the week. blah.

+++ i met with my psychiatrist this week to catch up after hospital stays and all that has happened in the last couple of weeks/overall last month. it is always good to catch up with her, and i usually do not get a word out before my tears start to fall. it is always good in that it is hard to talk about some things but necessary. and she brings some things up that maybe i don't even recognize myself or have not said out loud. i need to continue to find my way through grief (not that grief reaches an end point) on the decisions made and all that has been lost along the way.

+++ we have put yet another vacation on hold. we had hoped to take malena to disneyland at the beginning of august but with how i am feeling that isn't going to be possible. disappointing for many reasons. and another one in what seems like never ending decisions that results in letting one more thing go.

+++ you can sign up to do happy mail for kelli if you want to participate: all the info is here

thank you to all who have already signed up - and if you have signed up and i haven't yet connected you with kristy, ping me again because i think that i have made all connections to date with people who have signed up and connected them with kristy.

+++ I also wanted to give an update on beth. here is the latest in her words:
Cycle 6 of chemo is done.  It went as expected.   The new anti-nausea med didn’t work  quite as well this time. Which is unfortunate. I was tired and didn’t eat as well.   I hope it works better next time. 
   But what is bothering me most of all is that every Sunday night after chemo  since I started this new drug I can’t sleep. I slept probably no more than 4 hours last night. And I’m exhausted and it makes me feel ill.  Since it has happened 3 times in a row I feel like there is a correlation to some rebound effect to the new anti nausea med.   So please pray for sleep for me.  I need it. It’s hard for me to function.  
   Other than that it’s been going fine. Lars and I tried to do some registry stuff on Saturday but I was tired so it wasn’t our best effort.  We went to church yesterday which was good for my soul. To be around people who I know are praying for us.  Last night we took a drive and took a walk along Lake Washington on a hot summer night.  It was really nice.  But mostly my treatment weekends are made for resting. So I am glad I got Good rest leading into the week and now I have to catch back up.  
   This coming weekend we are headed to MN for our first shower.  It’s a couples shower so Lars gets to go too.   We are looking forward to it.  There is so much to do for the wedding but treatment ends up being a priority always.   Cancer treatments definitely puts your priorities in order. I don’t get too worked up over the details. I never thought I’d be planning my wedding with Stage IV Cancer. It’s hard for me to even write that.  I don’t want to believe it and sometimes it still doesn’t seem real.  I am balancing something so good in one hand and something so bad in the other.  It just makes it tough.
     When our wedding planner asked us what we worry most about for our wedding I said that I will feel well and have energy.  Not the typical answer but that is the truth.  I just want us to enjoy the day and not have cancer be any part of it. 
  I’ve been getting tons of great happy mail which I am so appreciate of. I thank Alli and her friends for arranging it.  It does bring a smile to my face. 
   A quick update from me.  Thanks for your love, support and prayers.  

+++ still super thankful for all of the love, prayers, and mojo. one day at a time. xoxoxo

1 comment:

  1. Hope you're able to find a bit of relief this week. Sending love your way ...