Tuesday, March 21, 2017

funk

this has been a long week and it is just tuesday.

sunday night my feeding line got an obstruction in it somehow so we ended up going to the ER at midnight to see if they could work some magic to get the line free. luckily they were able to and we were able to come back home around 2am to start the feeding. that was a long night with little sleep and then we had to head into work. grueling.

today were my follow up appointments.

i wanted to hear that we could take out the feeding line.

that is not what i heard.

we met with the nutritionist and we are going to touch base on thursday to see how it is going. i am going to do one less pack of formula starting tonight and try to increase what i am eating through my stomach. my oncologist anticipates we will do feeding through the weekend and then decide on monday if we pull out the tube and i go to stomach feeding only on my own again.

we are going to cut down on the steroids starting tomorrow to start the taper off of them and are going to try to alleviate some of the other nausea drugs and see how i do. i will probably be tapering off steroids for the next couple of weeks.

we are not going to do an infusion as scheduled on monday since i am still on the steroids. we will do bloodwork, check vitals, and make a decision on the feeding tube. if it can come out, they can pull it out on monday while we are there. that won't be fun but at least it will be out.

i am feeling very frustrated and tired at this point. the feeding tube is a lot of work and makes it hard to maneuver at night and sleep because we have to be up multiple times. i am tired of being in the office with tubes coming out of my nose and across my face. i am tired of the looks that i get out in the public which range from "maybe i should stay far away from you to i feel very sorry for you". my legs are both incredible swollen from the steroids and so they are uncomfortable and walking with the cane continues to help, i am probably leaning on it more now due to my legs hurting so much than when i was just leaning on it because i was too weak to walk on my own without it.

i guess i would say that i am sick and tired of all of this that has been going on for now over 5 weeks heading into 6 weeks. basically a month and a half of feeling like shit and being limited in what i can do, what i can eat, what i can do for myself, living my normal life, etc.

so i am going to be in a funk for a few days, and that is fine. i deserve to be. these weeks have been hell and at some point you just have to allow yourself to be angry, sad, frustrated, etc. and that is where i am. i don't feel like putting a positive spin on it or looking for the bright side. this is a rough patch, i will come out of it at some point like i always do. but for now, i choose to be in this space.

thanks for all of the support as we continue to move forward. i do really appreciate it and it helps to know that we have so many that are supporting us through each day.

i hope that your wednesdays are good ones. please keep those vibes going to mary, beth, and kim - they need them too.

anywhere i fight, you fight.

and as always, there is certainly more fighting to do.

Sunday, March 19, 2017

tired + vibes for beth + vibes for mary + vibes for kim

our weekend was low key.

stuck pretty close to home for most of it. i did get out a little bit to a shop and to do some girl scout cookie drop offs with malena, it was nice to be a passenger and get to see some of the awesome blue sky that we had today.

i am feeling pretty tired tonight. definitely can tell my strength isn't back but am feeling a little bit stronger each day i think which is a step in the right direction.

all has gone as well as it can with the night feeding into my intestine. it is just hard to wake up multiple times a night and then try and go back to sleep. hence being really tired during the day.

i have follow up appointments with my oncologist on tuesday and some bloodwork and we will hopefully get an idea of how much longer the feeding tube will need to remain in. it is making the back of my throat incredibly sore and making it sore for me to swallow so i have been using some jolly ranchers to help alleviate that pain a bit for me.

in addition to how things go for me this week, i would like to ask for you all of your vibes, mojo, and prayers for three others too.

my sis-in-law kim continues to do well in her recovery from her two breast cancer surgeries and she is home and doing what she can to recover well.

my friend beth has scans on thursday to see if the spots on her lungs have changed at all. we will definitely want to hear that there is no change, and in the best scenario that they have shrunk all on their own. she will get results on friday.

my friend mary in wisconsin who found melanoma tumors in her leg again starts her treatments on friday. so we need to send her tons of mojo that the treatment does what it should and those tumors get annihilated.

so there are lots of things that we need to go right this week so start kicking up your vibes and all of your good stuff to help some positive things happen this week. we all need them.

i hope that your weekends were really good ones and that you go to do something fun, enjoy some blue sky, read a good book, take a nap, send some happy mail, do something that brought you a little bit of joy.

here comes the week, here we go, let's hope it is full of good things and good news. xoxo



 


Thursday, March 16, 2017

brutal

"experience: that most brutal of teachers. but you learn, my god do you learn"
(c.s. lewis)


we are tired. exhausted is probably the right word actually.


doing feeding through nose tube at home requires waking up at least every 2-3 hours to check the line, take meds, adjust if the alarm is going off, etc. so it makes for a long night, and more complicated then when the nurses had the ability to do it all solo. doing it all at home is a different beast for sure but we will continue to get used to it because we simply don't have another choice.


my feeding through the tube lasts about 12 hours for each run now, and i am still also trying to eat some food through my mouth to get it into my stomach in addition to the intestine where the feeding tube goes. it is a careful dance now of when i eat compared to when we start the line feeding to find the right balance of nutrition but not dependency on either feeding mechanism. obviously the overall goal is for me to go off the feed line and eat only through my mouth. but my appetite and my pancreas is not there yet.


i decided to head into work for a bit today and it was nice to see familiar faces and not the four walls of the hospital room. it was an odd experience to go to work with the tubing coming out of my nose and across my cheek and down my face, walking with a cane, jeans and a hat on because i knew i couldn't do it if i was uncomfortable on top of everything else. i didn't do a full day and that was a good call. i had reached my limit by the time that i walked out the door mid-afternoon.


we expect to do the home feeding through at least a good part of next week. i have doctor appointments next week to check in on how things are going. the home feeding will always start at night so i don't have to do tube feeding when at work or outside of the house. i am thankful for that, i was dreading having to do the feeding outside of the hospital or our home.


so we will see how tonight and tomorrow goes, and continue to carry on.


there is of course much more i could write about on how i am overall feeling these days but i am just too tired to write much more - that will all come with time.


i hope that your weekends are good ones. as you can imagine, ours will be very low key as i rest and try to gain strength and getting my stomach/pancreas on the mend. maybe also sneaking in beauty and the beast if we are up to it.


have a great weekend, thanks for all of the support and love and vibes.


happy friday peeps, have a good one. xoxo





Wednesday, March 15, 2017

Hospital... We're Home

The hospital stay is over.  Its been a long day and we're both ready for bed so we'll update more later but wanted to share the news. 

-B

Tuesday, March 14, 2017

hospital stay day 5

i am going to do a short update tonight, and as you can tell (no caps) this is me writing. my super guest blogger is getting a night off while he checks in on some things at home.


today was a long day.


i did not get much sleep at all last night.


i did not feel good through the night, had vomiting in the middle of the night, and then we had tests and vitals and then the sun was coming up.


i did get out for some walks today around the hallway, trying to get the strength up that i have lost in this last month. month. down for the count for a month. that is insane but that is the reality. my ass has been kicked. it is official.


but today, we got the huge feeding tube out of my nose, and eventually got a smaller one in - seems like whenever i leave here i will be taking a feeding tube connected to me. which i was hoping would not be the case.


the removal of the tube was not fun. crying. bloody nose, some more tears. then they got the smaller one in, more tears, and it got put it in wrong. so then we had do renter it in and pull the wire out. that wiped me out.


we went off the feed for a few hours so we would see if i got my own appetite back. i did a little but am still not eating much at all. we will see what tomorrow brings.


the tube feeding starts again in about an hour and will run through the night.


we will see what all of this means for a shot to go home tomorrow.


thanks for all of the love, mojo, messages, prayers. we really appreciate it. this last month has been really hard, i am hoping that we are really close to getting on the other side of it.


i miss my life.


i still believe that this year will be full of magic, it is just hard to see it from within these walls.


happy wednesday peeps.


anywhere i fight, you fight.


and there is no doubt we are currently fighting.


xoxo


++++ sidenote: they are letterpressing more "empathy, kindness, respect" shirts that i had wrote about in the blog a few weeks back - great cause - if you are interested, click here

Monday, March 13, 2017

Hospital... Day 4

Day 4 at the hospital brought some continued progress to get back to home.  With the goal of having Alli off of the NG tube when we head home today was transitioning back to solid food and transitioning off of the NG tube.  To be able to go out without a tube we need to make sure she can get a normal day's nutrition through solid foods (or with supplements).  While it is important to get the full nutrients it also has to be a low-fat diet to try and keep the workload of the pancreas to a minimum.  We haven't set a date to discharge but the hope is Tuesday or Wednesday depending on how it goes with the solid food. 


We also met with a PT doctor to talk about exercises to help rebuild her strength up.  We have been making laps around the hospital to help rebuild her stamina and strength as going almost a month without any real food really took it out of her. 


Keep the good thoughts coming and we'll update tomorrow.


-B

Sunday, March 12, 2017

Hospital... Day 3

Day 3 of the hospital visit brought some continued steps forward.  Last night was still a little rough but mainly as the steroids made it hard for Alli to get to sleep.  The nausea was present some but she didn't experience the same hard time as on the first night.  Alli has continued to be able to eat the liquid diets and is feeling hungrier so that is a good sign.  Also, she handled the feed at the slow rate for 24 hours without any issues so they have been ramping up the amount they are giving her to try and build back her nutrition.  She is almost up to the rate that the nutritionist set for a full dose and will continue the tube through the night (she can sleep while it keeps pumping). 


Knock on wood, if the feeding continues to go well and depending on her blood work they may try and get for her to start eating solid food again tomorrow.  How long the feeding tube stays in will depend on how that goes and how her body handles it.  Whether she needs to swap out the tube for a smaller home version or it comes out together really depends on if she can handle eating a normal amount of if it needs to be supplemented with the feed for nutrition.   


The nausea has also been manageable today.  It comes on a little bit as it gets about time for her next dose of the meds but the nurses have done a great job of keeping up on it to make sure the meds stay on schedule. 


The hopeful plan would be for us to head home on Tuesday.  Lets keep our fingers crossed we keep going in the right direction for that to happen.  There is a certain 8-year old girl we have both been missing immensely these last few days. 


-B