Sunday, May 20, 2018

numb + prayers for judy

i have no idea what to say.

i still feel completely numb from the news on wednesday.

i worked on thursday and barrett and i both took friday off.

there have been a lot of tears around this house.

there have been hard conversations, the start of many more to come. that i know for sure.

we didn't get any further news on thursday or friday so i don't have any medical news for you on what appointment comes next and when.

we are going to see if my surgeon thinks we can do surgery which we know is unlikely due to the number of tumors and the fact that the largest one is right next to a major artery. but i need to hear that from him directly just to know for sure.

we are going to see if i qualify for another trial at scca, but that one requires a tumor biopsy, and if they think that the biggest tumor is too close to that artery, they won't take the biopsy. and it is mandatory for that trial. so no biopsy, no trial.

we are going to see if my insurance will cover some pills i have not been on before for treatment that are incredibly expensive.

we are going to see if we need to fly to texas or maryland where two major cancer institutes are doing innovative treatments that require surgeries - that likelihood of us going there may depend on what we hear from my surgeon - we may go for the second opinion regardless.

we are going to see if a treatment may be an option that requires me to be in icu in the hospital for two weeks, then out for 10 days, and then scans to see if it worked before the second and final round. you have to be in the hospital and in icu because the treatment is incredibly tough to make it through and you have to be on constant hospital surveillance.

so we are going to work with my oncologist to determine the best path forward. he would like to not do anymore autoimmune infusions at this point as they clearly are not working.

so more to come when we know what we face ahead.

i will say that wednesday may have been one of the toughest days for me yet. hearing the results, being told i am off the trial, having the meds taken from me, having the needle that had already been put into my port pulled because there would be no treatment - it was all so overwhelming i can't put it into words.

for six months, i have taken 4 pills 12 hours apart every single day and my eating cycle revolved around that. i am 4 days in and can tell you that it is a damn hard habit to break. i have to keep reminding myself that i am no longer taking those pills. i no longer have to track to the minute when i eat breakfast and dinner. it is hard to move on from that habit, and even harder to move on from emotionally. i had a hell of a lot of hope in those 8 pills i took every day.

so it is now ten and my brother will be made if i don't get some sleep. so i better sign off for now.

but before i do, and this is incredibly important ---  one of my best friend's mom's cancer has come back yet again. i have wrote about judy on the blog before when her cancer was first diagnosed (i still remember clear as day waking up to the text from my friend kris telling me the news - you never forget those moments). around easter judy found out a large tumor had formed at the base of her tongue and the surrounding area. she is in a lot of pain and it is hard for her to talk. tomorrow morning (monday) she goes in for a very large and invasive surgery which will require breaking her jaw and re-opening her neck. it will also be dangerous as the tumor is sitting on the carotid artery. she will likely be in the hospital for a week to ten days and a very painful recovery period lays ahead. she checks in at 9am and surgery starts at 11am. please send every prayer and good vibe you have to judy and her entire family tomorrow.

anywhere judy fights, we fight.

gloves up for her tomorrow.

thank you. xoxoxo

Wednesday, May 16, 2018

no words

we got the worst news possible today. the largest tumor has grown and there are tumors on both lungs. i am off the clinical trial as of today. we are going to determine whether surgery is even an option, and look at two other possible options in the next few days. more to come on those when i can breathe. we are completely devastated and really have no words. send your love, we are going to need it.

Tuesday, May 15, 2018

results day

so tomorrow is results day. 


we will know whether the tumors have grown or stayed the same - or if a miracle has happened and they have shrunk.

to say i am anxious is an understatement.

i hate these nights.

barrett and i used to binge watch tv for most of the night.

i can't do that anymore, the fatigue is way too bad now.

i have not been sleeping well and have been having my usual sleep companions leading up to scans - nightmares.

i don't expect anything different tonight.

so please send your good vibes and love and prayers. 

results come early around 9am so i will know soon in the day which i am thankful for since this has already been dragged out long enough from friday.

please also keep sending your love to beth as she started her clinical trial today and now takes her chemo infusion home with her for the next couple of days. the new routine which should never have to be a routine. on a very, very good note - beth got engaged over the weekend and that makes my heart so, so, so, happy. there are no words.

i will let you know as soon as i can what the results are.

gloves up.

here we go again.

anywhere i fight, you fight. xo

Sunday, May 13, 2018

around here

+++ around here i had scans on friday. i didn't post thursday night about them as i normally would because i feel asleep early on the couch and barrett and malena just let me sleep through bedtime. on friday i checked in like normal. got my iv in my arm. i had taken nausea meds my oncologist had subscribed that we had hoped would help me to not vomit when they injected the contrast during the scan. that did not work. so i got sick and it was not fun. i was then out of it for about a good two hours from the nausea drugs that basically knock me out.

+++ around here, after i got done with scans, we headed to meet my sister-in-law kim for a breast cancer follow up she had with her surgeon so i could go to the appointment with her. it is still surreal to be back in those same hallways and rooms i was in before and after my surgeries, but i would not want to be anywhere else but there with her.

+++ around here, after that appointment, i went to work for the rest of the day and was pretty wiped out by the time that i got home.

+++ around here i had a good weekend. i got in a couple of sauna appointments. had my mom and dad in town. spent time with my mom, niece, and malena for pretty much all day yesterday. girl time is the best time.

+++ around here i woke up to my favorite drink from starbucks and a dozen roses and some great homemade gifts from my kiddo and a great gift from my other half. it was nice to have  a lazy morning and get to enjoy it with my parents and my niece and my family - and get to face time with my two sisters to wish them a happy mom's day too.

+++ around here my schedule got changed and i don't get scan results until wednesday. you know, why not just drag that agony out for us for a couple of more days. ugh.

+++ around here i finished reading the year of less. game changer. more to come on that for sure.

+++ around here i am rooting for beth as she starts her clinical trial on tuesday. start kicking up your good vibes, mojo, and prayers for her. 

+++ around here i am tired so i am going to bed.

+++ around here i am super thankful for all of your continued support, love, and prayers.

+++ around here i am sending you xoxo.

Thursday, May 3, 2018

for beth, part ii

this is beth and i today right after she got done with her scans.

following scans, she had a nurses appointment to go over her surgery to have her port reinstalled tomorrow and how her chemo pump will work when it goes home with her.

there are a lot of things i could say about how i feel about being there with her and watching her have to go through this again.

but for tonight, i will just ask for you to send some prayers and good vibes her way tomorrow around 11am pacific standard time as she checks in for surgery and that all goes as good as it can for what she has to do.

gloves up tomorrow for beth.

thank you. xoxoxo

Wednesday, May 2, 2018

for beth

tomorrow i meet beth as it begins for her. with everything else she is going through, i also can't believe that she lost her grandmother last night. life is so cruel at times. and i just don't get it.

before i let beth tell you in her own words how she feels about what is coming up, i wanted to note that i think that i have connected everyone who told me they wanted to do happy mail for kaylee with crystal --- and everyone who told me they wanted to do happy mail for jennifer and michael with kristy. if i have not, reach out to me so i get you connected. if you are not signed up for a week for either of them and would like to be, it is never too late. just let me know and we will get you hooked up with all the details.

and here is a picture of kaylee that was posted today wishing her brother a happy birthday. go kaylee go.

now on to beth...gloves up for her tomorrow please. xo
So on top of everything else going on my grandma passed away last night.  My dad's mom.  Even though we knew this was coming it doesn't make it any less sad.  And it has been a long time in coming.  She will be missed. I am glad I saw her when I was back at Christmas and Lars got to meet her.  My aunt Judy would print out my Caring Bridge updates for my grandma and she would read them all and pray for me every day.   Grandma Louise I love you and I will miss you.  I am hoping I can get back for the funeral.  It will be shortly after my first infusion so I am not sure how I will feel.  I will talk to my nurse tomorrow at my appointment and see what they think.

Tomorrow the real stuff begins.  I check in at 7:50 am for my scans, scans at 8:50.  This is a baseline scan for the study.  Then at 10 am I meet with my nurse to go over the drugs and side effects.  Reading the materials this past weekend was not fun.  It's so daunting.   Alli is coming with me which is so sweet.  She volunteered.  I know she knows this routine but I also don't like her having to sit by my side when she doesn't need to be at SCCA.  But I know she wouldn't have it any other way.

Friday the port gets installed.  Check in at 11:30, installation at 12:30.  It takes about an hour and then I'll be in recovery for a bit before I go home.  My friend Kristie is taking me. We are trying to preserve Lars's sick days for infusions and what else may come before the end of the school year.  Once the port goes in it is really real.  I still hate that thing and don't look forward to it being placed back in. Last time it hurt when it went in, so hopefully it won't hurt as much this time.   I do though have great friends who will go with me to appointments and I thank everyone who has volunteered to go with me, I will be reaching out in the future to take you up on that.

I got an updated schedule yesterday.  My first infusion starts Tuesday 5/15.  It will be a long day starting with labs at 9:30 and infusion going from 2-7.  uggh.   That means I am getting both drugs with that long of an appointment.  A little less than 2 weeks away.  Too soon.  It's coming too quick.

I don't have anything else beyond that for my schedule.

I am sure I will send another update this weekend after my appointments.

Thank you for your love, support and prayers.  And thank you for my grandma Louise.

Tuesday, May 1, 2018

may is melanoma month

today starts the day of melanoma month.

i post this "dear 16 year old me" video every year.

and i will keep posting it.

and i will keep hoping that you will watch it. or keep watching it if you have seen it before.

you can save your own life. your kids life. or someone you love.

isn't that enough said?

i think so.

watch it. 

it is 5 minutes.

i know you have 5 minutes to give to this in your day.

you know i wouldn't ask if i didn't think it was REALLY (yes, all caps) important.