Monday, August 13, 2018

and the hits keep on coming

I am going to make this short and share a text I sent as I don't feel like writing anything else right now or being on the computer.

so not good news today with oncologist today. he is keeping me off the treatment meds due to the side effects. i will come back next week for scans and to meet with him again. pending those, we will see what options i could do since my body has rejected so many of the others. he said there aren't many options left, so maybe we do look at open chest surgery and/or going to texas or maryland to see if i qualify for anything there. we are of course totally devastated yet again. keep the love coming. xoxoxo

Sunday, August 12, 2018

the last week and next steps

just a little catch up session from me.

my side effects continued through most of this week (joint pains, etc.) but then Thursday night I spiked a fever to 105 and have had fevers on and off since.

so on Friday my oncologist pulled me off my treatment meds. which is always devastating even when I am in pain and dealing with fevers. I want those meds to be doing what they should be doing which is fighting the tumors. the other devastating part of that is that he may say he won't put me back on them which will yet again be one more option for me that is no longer  really an option.

so we meet with him tomorrow morning at 10 to see what he thinks and where we go from here. it has been a tough week for sure but hopefully we will have a path forward tomorrow and I can get back on the meds. 

we shall see.

gloves up.

anywhere I fight, you fight.

and I leaving the capitals in because my big brother will already be mad at me and that will just make it worse if I take time time to fix them.

Monday, August 6, 2018

my joints are retaliating and they are winning

hi peeps,

in addition to the issues that i noted in my last posted, i have had joint pain all over my body (down to my toes and fingers).

it has been so painful that i can't get myself up and out of chairs or walk by myself again or of course drive at all. so i am back to using my grandpa's cane to help me get around. good thing that barrett is strong as we finally got to the point of him just lifting me up and down so i don't have to use any of my weight because it hurts too bad. just in the last day, i have been able to do some things by myself even though it hurts. 

malena and i are scheduled to go on a day trip tomorrow with friends and so i have been resting as much as i could and trying with our nurses to find the right pain combo so i don't have to cancel yet one more thing for her. it is still high temperatures here and since my skin can't be exposed to the sun due to the sensitivity from the treatment drugs, i will be the one wearing long pants and having a golf umbrella with me at all times. it is what it is. if it means i can make this trip with her, then all of the pain and the crap i have to deal with to do it will be worth it. wish me luck.

we think that monday is my check-in day with the doctor to see if we up the meds. we will see what he says based on how this week is going. no set days for scans yet.

i hope that your summers are going well and are much more fun than being in a lot of pain and bed most of the time. if you can get out, get out. go to the park. get your feet wet. go the playground with your kiddos. take yourself to that movie you have been wanting to see. take that drive you have been wanting to do. go get that ice cream cone you want. walk you dogs. check out a new beach or trail. just sit and breathe. whatever you want and can do. do it. and make sure if you are outside you wear you sunscreen the whole time. and reapply. of course. or you know i am coming after you, and i have a cane too now.

also, reminder if you would like in on the happy mail for kelli campaign it is never too late, just let me know and I will hook you up with kristy the awesome coordinator for this round. she is pretty awesome right? right!
ps) I got a comment from someone who knows my friend jen nik but you show up as "unknown" so I don't know how to contact you to get you on the happy mail campaign, can you let jen know who you are so she can connect us? thanks!!!!!!

xoxo peeps

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

Monday, July 30, 2018

kicking off a new happy mail campaign for kelli and i hope you will join me

a couple of posts ago i wrote that while i was in the hospital the time before last, john finished his fight with melanoma stage iv and hung up his gloves for the last time.

john leaves behind family and friends, but also his wife kelli who describes herself now as "trying to navigate widowhood, my better half lives on through me." they were married last october.

it has now been over a month since john hung up his gloves and i know that some days are harder than hell due to the grief, and some days are a little easier. it swings day to day.

i asked kelli if a happy mail campaign may help as she moves through these months. she said yes.

so here we are.

this will be the first time we have a done a happy mail campaign for a widow of melanoma. i would like this campaign to let kelli know she has support from near and far and to just keep taking everything one step at a time (pretty much her current motto). 

if you have not heard of a happy mail campaign, we do them pretty often on the blog . the way it works is you tell me you would like to have a week assigned to send kelli happy mail. the week you are assigned, you just need to send her at least one piece of happy mail (a card, a postcard, etc.). if you want to send more, you are certainly welcome to. that way every week kelli gets something in the mail (other than bills and death paperwork) to let her know there is a whole army cheering her on from near and far.

if you would like to participate, email me/instagram me/facebook me/text me/leave a comment on the blog, rent a hot air balloon, whatever it takes --- and i will sync you up with my friend kristy who is helping to organize this campaign and will have all of kelli's likes and her address - and kristy will tell you which week you are assigned.

if you have any questions, please let me know.

gloves up.

let's make kelli's days a little brighter.

are you in?

Wednesday, July 25, 2018

next steps for me

i had my oncologist appointment today.

bloodwork looked good. 

today i went back on one of my treatment meds at a lower dose.

if that holds and i don't end up back in the hospital (let's all cross our fingers please) then in two weeks we will up the dose and potentially add the second drug i was on back into the mix.

i will have scans in the middle to end of august. it is too early to do them now because i have been on and off the treatment meds too much due to the hospital stays, and having to take the antibiotics and steroids in between all of that.

i am still on the antibiotics, i am off the steroids as of today (hallafreakinluah).

the rash is going away and the welts are pretty much gone - and that is a very good thing. trust me.

so that is the plan moving forward now. one day, one pill, one blood pressure check, one breath at a time.

i hope that you all had a good wednesday.

thanks for all of the love, prayers, and ongoing mojo.

maybe, just maybe, the tide will start to turn.

we can only hope.

gloves up. xoxoxoxo

Monday, July 23, 2018

jennifer and michael update

today was a day with good news.

things with jennifer are looking good.

she is still healing obviously, but the doctor said that it looks like the tumor has shrunk and is not as obvious in the scans. yes to that!!!!!!

her next scans will be in 3 months.

thanks for all of the love, prayers and mojo you sent their way for today.

clearly it all worked.

you guys are magic makers (i already knew that).

isn't it nice to have a day with some good news in it?

i think so.

happy tuesday friends. xoxoxo