Home at last!!!

Great news is we are now home as Alli got discharged yesterday afternoon (Friday)!  Malena was super excited to have her mom and dad back and it was nice to sleep in our own bed and not have beeps, buzzing, and any other description for hospital sounds going on through the night.  Even though UW generally thought Alli had an infection they couldn't definitively say what cause the issue and if it was truly an infection and/ or inflamed gallbladder, side effects of the medication, or some combination.  We have an appointment with the oncologist on Monday to talk about next steps moving forward.  He didn't want to restart any medication over the weekend so this weekend is trying to get as much rest and recuperation as possible.  

Sorry for the abbreviated blog but trying to catch up on some things around the house.  More to come next week after the appointment.  

-Barrett

Hospitals are no fun :( part 2

Wednesday has come and unfortunately we are still in the ICU, though hopefully we are closer to the end than the beginning of her stay here.  Alli was starting to have some of her blood pressures look better Monday afternoon but then things rolled back down a little bit in the evening as she developed a fever and lower blood pressure again.  Things started to turn back towards the positive yesterday afternoon and have continued to improve.

It still isn't completely clear what caused this to happen whether there was an infection, side effects, or some combination.  All of the cultures to date have come back clear so they haven't clearly identified anything.  She does have an enlarged gallbladder (11mm instead of 3-5mm) but doesn't have some of the other tell tale symptoms if that was the true cause.  As the attending doctor said this morning... our girl is unique :)

After meeting with a GI doctor yesterday and with her improved blood pressures last night and through today they think she should be ready to move out of the ICU today as they really aren't doing any "ICU things" anymore.  Since she got more IV fluids yesterday the earliest they would discharge her is tomorrow; but that is the goal we are focused on.  They also want to have a plan in place for her gallbladder before they will discharge her, so a consult with the surgery team is on the docket for today to get their thoughts on if we let the gallbladder stay, put in a drain in, remove it now, or remove it later.  

So good thoughts on the continued recovery and knock on wood... hopefully, maybe, possibly, fingers-crossed she can go home tomorrow.

Hospitals are no fun :(

This is the husband which you might have been able to tell by the actual use of capital letters. Alli wanted to give a quick update since the blog has been quite for a couple days.

As you can tell by the title the last couple days didn’t quite turn out according to plan. Alli got some nausea, big chills, and then high fevers on Friday.  Then very early Saturday she passed out and fell a twice so off to the UW ER we went. She ended up having a very, very low blood pressure which is what caused the passing out and falling.  Long story short they aren’t sure yet if the low blood pressure was from an infection, side effect of the new meds (which do cause fevers, low BP, etc), or some combination.  She is in the ICU to give her meds to get her blood pressure back up to a a normal spot for her as well as give her some antibiotics in case it was an infection.  

Last night went good and they were able to have the blood pressure meds dialed back but keep her BP up. The goal for today is hopefully she can get completely off the BP meds all together.  That being said we are probably at the hospital for at least a couple more days. They are waiting on some test cultures to help determine if it was an infection and continuing to monitor her blood pressure to make sure it can stay where it should on its own. 

Will give more updates as we have them

-Barrett

nausea, you are such an ass kicker

all of a sudden today at about 2pm the nausea hit. 

and i took one of my meds to help.

and then a little bit after that the tidal wave came and i could not even stand up.

good thing that my boss has a couch in his office because i barely made it there to lay down.

thank goodness that barrett and i work at the same office as i caught him just before he was leaving and told him he was going to have to drive me home (we don't drive together because of our kiddo's drop off/pick up schedule). so he drove home and I tried not to vomit in the car. i got home and immediately took my other nausea med and laid down in bed. that second med finally kicked in, i could eat a little, and then went to watch malena's gymnastics.

and now i am super tired but have to wait until 10 to take my last dose of meds.

i also wanted to ask for good vibes and thoughts for beth tomorrow as she heads into chemo round 3 - send her all the mojo you have; and to john and kelli who are home with hospice care doing "the best they can" in her words (i can't even imagine how hard that is, she posted a picture today of them holding hands and i know i felt my heart crumble again to the bottom of my feet).

also, lisa (who you all know from doing happy mail for her as she recovered from breast cancer radiation and side effects) has taken on a project of knitting blankets (and coordinating with other knitters around the country - how awesome is that???) for kaylee's project for kids with cancer that i wrote about in this post. if you are a knitter or make blankets, and would like to make some blankets to donate to this project, let me know and i will put you in touch with lisa who will organize it and coordinate through crystal (our happy mail campaign manager for kaylee).

so onward we go, we will see what tomorrow brings. i hope that it does not bring nausea, i know it will bring muscle aches and on and off fevers/chills because those aren't going away. pretty sure those are here to stay. i think that i would take those over the nausea, it is just that debilitating for me. ugh.

happy wednesday peeps, we are halfway there. thank goodness. am i right? i know, i am totally right (insert fist bump emoji here). xo

around here

+++ around here the side effects are coming on strong. my joints constantly ache, some of which I don't think that i knew i even had before.

+++ around here on saturday night i woke up at 3:30 extremely nauseas, vomiting, with a fever, and then chills so bad that i though i might break my teeth of my mouth. 

+++ around here i woke up nauseas this morning and my clothes were soaking wet. 

+++ around here the side effects aren't messing around and it again appears i will be on the end of the spectrum that gets them all in full force.

+++ around here i have been quiet in this space and life as i am just trying to get used to this new normal yet again.

+++ around here beth got through her second round of chemo. i am still pissed that she is having to go through this. you should be hearing (or already heard) from kerry soon if you haven't already about your week for happy mail for beth, so if you signed up and you don't hear something in the next day or two, ping me again because that means somehow i didn't let kerry know.

+++ around here michael sent me some pictures of him having a mai tai as i asked him too on their trip to hawaii to rest after jennifer's latest treatment. i am still sending those two a ton of love as well. if you want to do happy mail for this fantastic couple and haven't signed up yet, let me know and i will put you in touch with my friend kristy who is the organizer for that campaign.

+++ around here my friend kelli and john decided that instead of continuing any treatment, the best decision for them was to come home and begin hospice care. i am not sure there are words that explain about how i feel about the fact that melanoma stage iv is the reason they have to make that decision. my heart is moving around in pieces at the bottom of my feet. clink clink. please send them all of the love and prayers you can in these final weeks they get to spend together.

+++ around here i just found out that another friend's melanoma has come back again. i am sure that you can guess the words i have to say about that.

+++ around here we met with my surgeon. he would do surgery and thinks that it is possible. it would be a more invasive surgery than my other two, they would need to open my chest to get to the tumors. they would remove the middle lobes of both of my lungs which should not greatly change my overall lung capacity. we are getting an appointment with my oncologist to talk about this option and decide how we want to proceed and if we are going to go to texas and/or maryland now that we know surgery is an option. more on that when we know more.

+++ around here we have appointments coming up with my palliative care counselor and my psychiatrist. because it takes a village. and when you have anxiety and you are battling side effects, and cancer is everywhere you turn, you need others to talk to you. even if all these things aren't happening, it's ok to need someone to talk to you. with the sad news that shook our world last week, i encourage anyone and everyone to reach out to whoever you need to let them know you need help - whether that is ears to listen, some medication to help, whatever it may be - it is more than ok to need help. and it is more than ok to ask for it.

+++ around here i am going to tuck my daughter in for the night.

+++ around here i will take my pills at 10pm and then we will see how the night plays out.

+++ around here i appreciate your reading these words.

+++ around here, i am sending you much love. xo

...and so it begins...

"if you're in pitch blackness, all you can do is sit tight until your eyes get used to the dark." 

(haruki marakami)

well, it took only one dose for the side effects to kick in.

by early evening yesterday, the joint/muscle aches had kicked in and i had a headache and chills.

by bedtime, i could barely move i hurt so bad.

this morning i woke up pretty sore (expected that) and then when i got up out of bed a tidal wave of nausea hit. oh, nausea - you are always such a pain in my ass. 

so i am of course already taking some meds to help with the side effects, and my nausea meds kicked in and took care of that eventually and the muscle aches were lessened some. 

so more pills on top of the pills i am already having to take. the irony of it all.

we figured out what timing would work best (but still be a pain in my butt) for taking the meds.

i am taking my first meds at 10am, which means i have to eat before 8am every morning and then not eat between 8am and 10am. i am taking my second dose at 10pm which means i need to eat dinner by 8pm and not eat between 8pm and 10pm. it was the only way that we could figure out i could keep it on the same schedule every single day and be 12 hours apart with the limitations i have (having to be on an empty stomach and taking them either an hour before i eat or two hours after i eat). so it is not convenient but no other schedule we could figure out would be convenient either and work for a 12 hour swing consistently on a daily basis. my last meds had a 12 hour swing but they were taken with food which made it easier, and i could taken them + or - 2 hours if needed. 

but i don't think that the word convenience coincides in any way with the word cancer anyways so none of this is a shocker.

so, here we are. the end of day 2. i have a headache, my joints and muscles hurt, and i am ready to call it a night.

onward to day 3...

thanks for all of you that have continued to sign up for the happy mail for beth (see last two posts if you need more info) -  you can sign up any time, just let me know. kerry is getting everything organized and will be assigning weeks and sending out more info later this week. happy mail has already started flowing to beth this week - you all ROCK (yes, i used all capitals. that is how good you all are).

xoxo

around here, part ii

+++ around here the meds came on friday and we got the second walk through of the side effects with the pharmacist at scca. there were some additional ones that they mentioned, but i am already anxious enough tonight so I will write about those tomorrow next time.

+++ around here i had a good weekend. went to spokane for a quick girls trip with my sister, hung out with cousins, and had and great weather for the drive over and back. I got home early enough to spent a good chunk of my day today with barrett and malena which was also great.

+++ my meds did come on friday. i start them tomorrow. i feel about one million emotions about this, anxiety is right at the top. the side effects, how i will feel, if they will work, all of it. it is a lot to take in and manage and handle. but there isn't another option so here we go.

+++ around here mike did confirm through pictures that he lived up to this deal to have mai tais for me. that boy never disappoints;)

+++ around here beth isn't feeling so great, I will let you tell her in her own words:
Cycle 2 has not been my favorite.  I don’t feel so hot.   More nausea and fatigue.  But am hanging in there. This is one of the bad days.  I’ve slept a lot today. 
   Everything did go as planned for infusion and pump removal.   We heard something weird during my appointment Thursday.   I had understood I could drop the one chemo before the nerve damage got bad and continue on the other.  But it doesn’t sound like that is allowed under the trial.  I would have to drop all chemo at the same time.  You can drop your dosage twice and stay in the trial.   They are confirming that and getting back to me.  My research coordinator wasn’t there and neither was my doctor.  So we will see. They didn’t sit well with me or Lars. Not what we were expecting.    So we will neee to figure that out.  I can drop the chemo and stay on immunotherapy to see if that is working too.   But in my head I didn’t think this was the plan.  
   Alli is starting on some new meds, seeing her surgeon this week and weighing different options.  A lot to deal with. 
    So a lot to take in all around.    I won’t write too much today but wanted to fill you in. 

Thanks for your love, support and prayers. 

+++ please keep sending her your love and prayers. also, i announced in my last blog post that we just kicked off a happy mail campaign for beth over the summer. she said it would add some cheer to her days as she moves through chemo rounds. if you need more info, read the details about it in part of my last post. please let me know if you would like to sign up and my rockstar friend kerry will get in touch with you with all the details. thank you - thank you - thank you for making this happen for beth. i really, really, really appreciate it. and i know she does too.

+++ crystal posted an update about Kaylee tonight and i thought that you all might like to read the latest on she is and the latest on what she is up to (is this girl amazing or what??):

Hi all -

Just wanted to check in with everyone and give you an update on Kaylee. Currently Kaylee has finished her treatment and is awaiting scans the end of June to see how well treatment went. Her doctor's are optimistic as initial results show success. Meanwhile, Kaylee is recovering at home. Her hair is beginning to return and she has attended several of her brother's baseball games enjoying the return of nice weather. Kaylee would like to thank everyone who has send her uplifting mail thus far. The outpouring of love and support has meant a lot.

During treatment, Kaylee received a bag from Chemo Bags of Hope. She was moved by the gesture and now that she is feeling better she is working with with organization to bring bags to all children receiving chemo or radiation at Children's Hospital as she learned this is too many kids. She is collecting items to fill these bags. Some of the most needed items are hand sanitizer, kleenex and backpacks or other bags. Other items can be found on the website under "How to Help"; items are also needed for adult bags. http://chemobagsofhope.org/about/ If you are inclined to contribute, you can send the items directly to Kaylee. They are also now a 503c3 organization for your donation information. This organization is only a couple months old. 

Thank you all! I will continue to update you as I have more information to share. Keep sending your love to all our fighters!

+++ i also want to ask for love and prayers for my friend marcie (who i call marcie-roo). the vet discovered last week that frieda has cancer in her toe and in her lungs and her tumors are growing. she doesn't have much time left with marcie. I think any of us that have had pets know this is such a heartbreaking time to move through as pets are just as much family as humans are. so please send her and frieda your love, prayers and mojo.

+++ lastly, today was national cancer survivor's day. for those that don't follow me on Instagram (jill p - I might be talking to you;) or facebook, here are my thoughts on today:

today is national cancer survivor’s day. i prefer fighter over the word survivor, but regardless, i am not going to let this day pass without sending my love to those who have hung up their fighting gloves for the final time, those that still in the fight for their lives, and those who are now cancer free. and to the caregivers and the family members...my love goes to you as well because you are most certainly a fighter too👊🏻🥊❤️
#findacure

#f%#*cancer

and with that, i will say goodnight. it is 10:10 and my brother is going to be mad i am up late.

gloves up. 

another round in the ring begins tomorrow.

anywhere i fight, you fight. xoxo

around here

+++ around here it has been a bit quiet, i am still trying to catch my breath and i still feel pretty numb.

+++ around here i am feeling like i am going through a detox off of my old meds and my routines associated with them. i still reach to take the meds when i eat and then remind myself that i don't need to do that.

+++ around here i took this week off of work, i needed to catch my breath, have a chance to get some rest, and work with Barrett on getting some things taken care of.

+++ around here we have had multiple discussions on next steps regarding treatment. here is what i know as of this morning:
- i am going to start on two drugs i have not taken before that come as pills on either sunday or monday. the side effects from these can include fevers, chills, joint aches, rashes and headaches, etc. unlike before with my old meds that i took with food, i have to take these on an empty stomach 1 hour before i eat or 2 hours after i eat and i need to do my best to take them 12 hours apart. So, living life around a 12 hour swing will become my normal again but this will be different since I can't time it with when i eat which makes it just a little more complicated (of course).
- The radiologists at seattle cancer care won't do the biopsy on my lung to get me into the trial there because it is too dangerous with the major artery right next to my tumor. The biopsy is a must for that trial so I will not qualify for that one. i got that news last friday and it still stings.
- i meet with my surgeon on wednesday to see if he would do surgery to remove the tumors. to be honest, after the radiologist's thoughts i am not too optimistic but i need to hear what he says directly from him. i know he will give it to me straight.
- based on what he says, barrett and i will decide if we will go to texas or maryland to see if there is anyway that i would qualify for trials there. which means being away from home and going through surgery there and scans there, etc.
- it is all overwhelming, there probably is not a better word for it.

+++ around here we are also working on our list of what we called "legacy projects" with my palliative card specialist. these are things that i want to have done in cause things happen quickly and i don't have much time left, which i know is hard to read, trust me - it is even harder to write. it definitely does not mean that i won't pick up my boxing gloves again when i start to take these meds again and go through whatever lays ahead. but it does mean that we want certain things in place and my biggest regret would be not having those things done for my family and my friends if i found that time was short for me. it is very emotional to even work on a list much less to work on the projects themselves, but the time has come to do it - i can't put these things off any longer. more to come on those projects as some of you may want to get them done yourselves just because they are a good things to have done regardless if you plan on 80 more years or can't count on that.

+++ around here i am rooting for judy who came home from the hospital and has started her road to recovery. 

+++ around here i am rooting for beth who went in yesterday for her next chemo treatment and is resting at home today. 

+++ around here i am rooting for our family friend ellie who was recently diagnosed with cancer and very rapidly moved into chemo appointments.

+++ around here i am rooting for lisa who has a follow up appointment today with her breast cancer doctors.

+++ around here i am rooting for jennifer and mike. jennifer had a treatment on tuesday and her and mike flew to hawaii for a few days to recover. I have had mike drinking some mai tais for me:)

+++ around here i am rooting for kaylee as she recovers from her radiation treatments.

+++ around here i am rooting for my new friends kelli and john (john is a stage IV melanoma fighter) as they look for a new trial that will work him. his melanoma has spread, he is in pain, and the latest trial he was in did not work. They are hoping to get in on at the university of washington soon as soon as he can get his strength back.

+++ around here beth let me know that she would love a happy mail campaign over the summer as she continues to move through chemo treatments. you all know how this works, but just in case - you will get assigned a specific week (by my awesome friend kerry who is helping me organize this) and all you do is send a card, post-it note, package - whatever you want, there are no rules except that you send her one piece of happy mail mail the week you are assigned to make her life a little bit happier as she goes through treatment. if you are in, let me know and i will give kerry your name and she will get your organized and ready to rock. thank you in advance for all of you to sign up and make a difference for beth.

+++ around here, as you can tell from above, there are many cancer fighters out there that need your love, prayers and mojo. thank you for sending it to them. i really appreciate it.

+++ around here, i hope that you have a great weekend - mine is going to include time with my sister and niece and barrett and malena. just what I need.

take good care. xoxo