Wednesday, December 12, 2018

Important Alli Update


I wanted to give all of you an update on what has been going on with us over the last couple days.  As Alli has always said, wherever she fights, you fight; though this has will be the toughest blog for me to write.

Alli was admitted to the hospital on Friday night.  She got very, very nauseous near the end of the day at work so I started to drive her home.  In addition to getting sick on the way home she also started to not recognize where we were even though we have driven that stretch of road countless number of times.  As we started to head to the UW ER department Alli started to get more delirious. 

Starting that night and over the following days they did numerous different scans of her brain and her chest.  The scans show that the melanoma spread to Alli’s brain cavity, spinal fluid, and around her spine.  They believe that the melanoma may have disrupted the flow of fluid in her head and irritated the brain that has been causing her nausea, headaches, and may have caused a seizure that led to the deliriousness.  She has also been experiencing challenges in her short term memory where most things don’t stick in her memory.  So remembering conversations, if she saw a doctor, etc are very hard for her right now. 

Alli started radiation therapy on her brain yesterday.  She will have it every weekday for the next two week, with the last scheduled treatment on Christmas Eve.  The hope for the treatment isn’t that it will kill all the cancer but that it will reduce the symptoms she has been having lately so she is more comfortable.  After finishing up the radiation the plan is for her to go back on an immunotherapy drug, a different brand than what she was on previously, with infusions every three weeks.     

Now for the hardest part… Given how her melanoma has reacted to all the previous treatments they think there is a slim chance that it will stop or push back the melanoma.  Their primary hope is to slow down the cancer.  There is never an exact science to this and people beat the odds and prove them wrong but they think it could be that she has just a couple months left.  As most of you know Alli is a very determined woman and is doing everything in her power to beat the odds.  We need a few more prayers as she picks up her boxing gloves again for her and the treatments to beat the odds. 

F*ck cancer.  Wherever she fights, you fight

Barrett

Wednesday, November 14, 2018

long time, no blog


+++ as always, didn’t intend to step away from the blog. but it happened. the truth is that i used to write blogs at night after malena went to sleep. i now to go the sleep at the same time she does usually because i am so tired so i haven’t carved out the pocket of time for the blog yet. need to work on that.

+++ i am on the second med now (so taking two treatment drugs now along with my anxiety meds and various others). i had a checkup yesterday and bloodwork looked good. i have been having a lot of pain on my left side so i had an ekg and a x-ray. no indications of tumors or lesions so i must have just really pulled a muscle somehow. so that was good news and hopefully the pain lessens over the coming weeks. i will go back in about two weeks for another checkup and then scans will occur after the holidays.

+++ my hair continues to fall out and am getting bald spots. i have been wearing hats pretty much every day because it is emotionally hard to see my hair fall out during the day and so hats give me a break from that for a few hours at least.

+++ i am really fatigued and tired. some days are worse than others. but i am just so tired, hence the going to bed at the same time that my 9 year old daughter does. zzzzzzzzzzzzzz.

+++ the joint pain continues on and i am trying to keep that under control through a combo of advil and tylenol. i feel like those are currently my go to’s between my joint pain and the pain i have on my left side that takes my breath away sometimes when i move.

+++ i have had to cancel out on plans many times because of how i am feeling. and i hate that.

+++ i celebrated michael and jennifer getting the best news possible – she went in for scans and they found no signs of cancer. it does not get any better than that my friends. the best news ever. and that is an understatement.

+++ i am rooting for my friend mary in wisconsin as she has started her cancer treatments, and she too is feeling serious fatigue. but like the fighter she is, she is hanging in there like a champ.

+++ i got the chance to meet kelli (that we are doing the happy mail campaign for) in person for the first time and that was great. i wish we were meeting under different circumstances. she rocks as i expected she would and we chatted at starbucks for like 2 hours straight like we had done that a million times before. i am looking forward to doing that again soon. if you are on instagram, you should be following her (let me know if you need her handle). you will laugh and you will cry – and you will cheer her on for being so damn brutally honest about being a young widow and the grief. oh, the grief – the topic that is so hard for people to talk about but it is the one topic those dealing with it need to talk about the most – next to talking about the people they lost.

+++ i am still cheering on my friend lisa that we did a happy mail campaign for as she continues to heal and deal with the after effects of her surgeries for breast cancer.

+++ i am still so proud of my sister-in-law kim for walking 60 miles for breast cancer in september and will be using her for inspiration to train for our annual 5k run and polar plunge on new year’s day. i have kelli talked into the run and plunge too this year, and she is doing a fundraiser for melanoma research foundation – and if she earns enough – she will do the plunge and let it get videotaped. you know i will be sending out more information on that soon.

+++ my anxiety has seemed to be increasing, and it comes along with this voice that tells me i am doing a crappy job at work, at being a wife, at being a friend, at being a mom, at being…the list goes on and on. it is interesting how anxiety grabs hold and tells you stories after stories and you start to pretty much wholeheartedly believe them. i am trying hard not to, but that voice is hard to overcome. i am going to try to increase my anxiety meds to calm the voices because they are getting louder and louder. i share that because i don’t think that we talk about anxiety enough in this society, and for some reason it seems like this dirty little secret you aren’t supposed to talk about but learn to life with. at this point, i need my meds or i don’t think i would be able to get out of bed many days. so knowing when i need more help is ok, for me, not asking for the help isn’t because i never want to go through what i did last year when i had the massive panic attacks that i didn’t think that i was going to find my way through.

+++ i officially have what i call “treatment brain”. i often can’t remember where i parked. i spent probably 10 minutes looking for my car in the safeway parking lot on monday night and i wasn’t in the store that long. more days then not i can’t remember where i parked at work. i can’t remember words that i want to say. i can’t remember names. i forget simple things. like tonight at dinner the bill came, and then i went to sign it and there was only one piece of paper and no pen. and i was clearly confused. then my friend kindly reminded me i hadn’t even put my card down to pay yet. ugh. the brain gets all muddled up with the drugs, that is for sure.

+++ i have headaches almost every day and i never have headaches. they are not enjoyable. my empathy to all of you that suffer from headaches and migraines. i always knew it had to be miserable, now i feel your pain. it feels like my whole head is about to implode, and i get the worst of it in the back of my head.

+++ i am wondering how in the hell is it almost thanksgiving. seriously.

+++ i am excited about all of the things that i want to do in november/december that are fun and things we only get to do this time of year. holding on to old traditions, and embracing new ones.

+++ i am missing reading. a lot. i haven’t found the time for that after i had to quit going to the sauna a couple of times a week due to my meds. somehow need to find that time back. i so miss turning those pages (i am a hardback book girl).

+++ i saw “a star is born” – if you haven’t, you must. enough said. i may or may not have sang the soundtrack out loud with my sister this last weekend when we had a road trip home. she sang too by the way and we pretty much rock as a duo. we may have also listened to some kenny rogers. we may have used our thumbs as microphones. you’ve got to know when to hold them….

+++ i have been watching my girl swim, cheer, do gymnastics, hearing her at the end of choir, and loving all of it (maybe a little less when it is outside and cold and/or rainy).

+++ i am wondering how it is possible that my girl will turn 10 next week. can’t process that one at all. but i can definitely process that my husband will turn 40 this weekend and will finally again be in the same decade as me. yes to that!

+++ i have found that my taste buds have changed and some things sound good, some do not. and it can change day by day and hour by hour which makes it especially fun annoying to try and plan meals for the week or even the day.

+++ i have really wanted to win the mega-millions. really bad. like, really, really bad. but so far, that hasn’t happened yet. dammit.
+++ i am overjoyed that my friend beth (yes, the beth we all root and cheer for on this blog) is getting married on saturday. i can't say in words how happy i am for her and her awesome fiancé lars. bring on the kleenex because i will definitely be needing them. probably two boxes. all to myself. just to get through the ceremony. two more for the reception.

+++ i have become 100% convinced that my slippers make my life better. if i could wear them 24/7, i so would.

+++ i have already started my christmas shopping as i refuse to be frantic the week before the holiday. ok, i probably will be anyways (thanks anxiety) but at least i won’t need to buy all the presents that week. go me.

+++ i hope that you all have a good thursday. we are almost creeping over the finish line.

+++ xoxo

Monday, October 15, 2018

results

the tumors have remained the same size, would have loved some shrinking but happy with them maintaining for now. adding a second drug back in now and then come back in a month for check-in. scans again in two months assuming no problems. keep sending the love❤️

Thursday, October 11, 2018

scan day, yep - it's that time again

first off, thanks again to everyone who contributed to kelli's fundraiser for the melanoma research foundation in john's name. the total was over $850, you all rock (i already knew that). the winner of the gorgeous cards from my friend jill was my mother-in-law jo who was super excited to get them! thank you all, mission accomplished and you made a difference for kelli and she was so excited to see that total climb.

friday is scan day for me.

i go in at 3:30 and have a ct scan first.

then bloodwork.

then a 45 minute mri. i can hear the jackhammer noise now.

we get the results on monday morning at 8:30.

so start sending all the mojo, prayers and love our way.

gloves up.

anywhere i fight, you fight.

here we go. xo

Sunday, October 7, 2018

thank you

such a huge thank you to all who contributed to the text for fundraiser for kelli's birthday.

you all rock.

we did it! we got her to her $500 mark and beyond to $780!

thank you, thank you, thank you - i knew that we could do it, and of course, we did. 

i want to make sure that i have all the names for the card giveaway and for the total for kelli.

so if you donated and didn't let me know, please let me know on monday so that i can do the card giveaway and give kelli the final number if it changes.

and please send her your love for monday as she moves through the day that would have marked their one year wedding anniversary. i can only imagine she can use every good thing we can send her way to find her way through the day.

thank you. xoxo




Friday, October 5, 2018

kelli's birthday + fundraiser for her birthday (please donate!) + card giveaway



this is kelli and john.

kelli is the awesome person that we are currently doing the happy mail campaign for as she grieves the loss of john to melanoma.

today, saturday, is her birthday. and this coming monday would have marked their one year wedding anniversary.

kelli has a request for her birthday.

to raise $500 for the melanoma research foundation.

she is currently $345 of the way there.

let's get her to $500 and make her birthday request come true.

it will raise funds for an organization that is working to find a cure for melanoma. clearly, it is a birthday request i can support.

i will be making my donation now.

if you donate, please let me know so that i can let kelli know how her total is growing.

to donate, you can go here.

also, for an additional incentive, my super talented friend jill gifted me some of her handmade cards that she paints and they are gorgeous. she told me to give them away as a giveaway on the blog, and i know that she would think that this is probably the best reason of all. if you donate for kelli's birthday, i will enter you into a giveaway to win the cards from jill.

i think that a donation for a woman who loved her husband more than we all could ever know deserves some love in return. am i right? yes, i think so.

so, let's make her birthday goal happen.

are you with me? any amount will help.

let's do this, i know we can. 

thank you. xoxo

super important update:
+++ my friend mary in wisconsin had her pet scan today and there is no melanoma anywhere else in her body. yes! she will start treatment soon so keep your fingers crossed that her side effects are minimal. she will have a port installed soon and then she will start kicking melanoma's ass. of course, i will be providing updates as she moves through the upcoming months.
+++ oh, and one other thing, f*&k melanoma.




Monday, October 1, 2018

check in day at the oncologist + good thoughts for mary

today was check-in day for me at the oncologist.

bloodwork first.

appointment second.

my bloodwork looked good but my potassium continues to be low. even after we doubled it after the last visit. that might be adding to my fatigue. so now we are doubling it again to see if that helps.

next up is scans next friday.

then comes the results on the following monday the 15th. so start sending the good vibes my way please.

the side effects continue.

my joints hurt pretty bad. some days i need the cane to walk. some days i don't. just taking it day by day. but i am pretty much hurting 24/7 it is just a question of which joints hurt the worst on any particular day.

my hair continues to fall out in clumps. my scalp is so sore even to the touch. i don't have any bald spots quite yet but it will just be a matter of time. some days i wear hats to work just because i get mentally tired of seeing my hair fall out onto my clothes even when i am not touching it.

fatigue continues to be rough. so tired all the time. there are times when i just can't keep my eyes open any longer (not when i am driving - don't worry, but at home). i pretty much want to nap all the time but life doesn't work that way unfortunately.

i also want to ask that you start kicking up the vibes for my melahomey mary in wisconsin as she goes in for her pet scan on october 5th and we need to ensure that melanoma does not show up anywhere. then she will have discussions on treatment and how to keep the black beast from coming back. so get those vibes, prayers and mojo going for her please.

sorry that i have been so quiet here. 

i never mean to and then the days roll by.

hope that you all had a good monday and your weeks are off to a good start. xo