it's out

today has been a long day.

we had a series of appointments this morning.

bloodwork.

medication reviews.

doctor appointment.

nutritionist consult.

and then, the tube removal.

for the bloodwork, everything that we got back today was looking good. we will get my pancreas results back tomorrow, but are hoping that they are trending the right way since everything else is. fingers crossed on that one.

i get to drop some of the numerous medications that i am taking. we are decreasing the steroids a bit and hope to continue to taper those as the next couple of weeks go by. i will do bloodwork again for the next two weeks to make sure that things are trending in the right direction. pending how everything goes, i will have another round of scans on april 14th to see what is going on with the tumors.

although i have continued to lose weight which is not what is ideally supposed to be happening at this point, the decision was made to pull the tube as we had hoped for. the actual experience of it coming out was not pleasant, and i will spare you the details of what it felt like. but it is out, that is all that really matters. my nose is a mess inside and out, from the tape that has been on there for weeks (which took some of my skin with it when they took the tape off) to the inside which bled when the tube came out.

the goal now will be recovery. trying to eat and gain back weight so that no one feels the need for me to supplement with the tube again. trying to gain my strength back. trying to get sleep again. hoping my mind clears up a bit as the steroids are doing a mental game with me this time. i can't remember things. i can't track conversations at times. i get things confused. all of which is very frustrating to me, in addition to feeling frustrated in general due to the steroids and the anger tendencies they bring.

overall the goal is trying to just heal up in general all the way around.

it was around the first week of february that i really started to have issues and not feel well. it has now been about 7 weeks, and to be honest, much of the last 7 weeks is a blur to me as i was so sick the entire time. it is a very odd feeling to feel like you kind of lost 7 weeks of your life. in some ways it feels overwhelming to start putting life back together again and figuring out exactly where to start after so much time has gone by and there is catch up to do on personal life and work.

thank you for all of the support over the last two months. i really appreciate all of the love, prayers, and mojo that have been sent my way through all different kinds of ways. i have felt every aspect of it and it definitely reminded me that i am never alone in this fight.

also, thank you for all the vibes for beth and mary last week. beth got the best results possible and there is no new growth and she is going to go to scans in 6 months. yes!! mary's injection went as well as possible and she will go in for round 2 in april. go mary go!

please also continue to send all your good stuff to my sister-in-law kim as she continues to heal up from her surgeries and deal with the pain that comes along with recovery.

i will probably be a little bit quiet in this space for the rest of the week as i am pretty tired and exhausted, and am going to be putting my energy into recovery and starting to get my life back.

thanks for everything.

anywhere i fight, you fight.

the last 7 weeks have been one hell of a fight.

thanks for sticking it out with me.

xoxo

friday + good thoughts for beth and mary

it is 5am friday and i have been awake pretty much all night.

i could not get back to sleep after the 1:30am tube clearing. then the alarm went off two more times throughout the night just because we needed a little bit more activity in the middle of the night.

this has been a long week. problems with feedings at night. pretty much total lack of any sleep. a lot of swelling in both of my legs and my face from the steroids. very sore throat and problems swallowing from the tube. on and on.

the latest is that tonight will be the last feeding as we try to taper me back down to stomach eating only ahead of the tube being pulled on monday. so i have one more night of the feeding and then additional calories to take in on my own saturday/sunday so that my system gets ready to do it all on its own starting on monday.

as you can likely imagine, i am beyond ready for the tube to be pulled on monday. although i have to say, actually having it pulled will not be fun for me. at all. i will be glad when it is over, but i am not looking forward to the actual process itself to be honest. but hopefully it will be quick and there will be no complications.

i am looking forward to two days of not having to be in the office and just being able to be more comfortable and around family.

i would also like to ask that you kick up the vibes, prayers, and for beth and mary today.

today mary starts her injection treatments for the melanoma tumors in her leg in wisconsin. i already got an update from her this morning that she got a good nights sleep and is ready to kick some melanoma ass today. i love that spirit she has, she is a fighter, that is for sure.

today beth gets her scan results regarding the spots on her lungs so that we know what lays ahead for her. this is a big day and one that i know has made her (and all of us that love her) anxious for quite a while. i know that with all of your good vibes, prayers, and mojo she will get the news that there is either no change or those damn spots have shrunk. anything else is just not acceptable. she is also one hell of a fighter, and i know that she too appreciates all of the support and good vibes.

i hope that you all have a really good weekend. enjoy it. make the most of it.

thanks for all of the love and support and vibes that you are sending my way -- and to mary and beth -- and please keep sending my sister kim good vibes as well as she continues her recovery from surgeries. i get to see her this weekend which i am very much looking forward to.

enjoy your weekends.

xoxo

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.

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

 

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

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

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

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

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

Hospital Update... Day 2

Day 2 of our hospital stay got off to a very rough start.  Alli got sick at about 3am and was super nauseous.  The NG tube that they put in... which was about the worst thing of yesterday... was on the larger side and kept triggering her gag reflect through the night so she never got any really good sleep either.  Not the kind of night we had wanted after talking to the resident yesterday.  After she got sick they also turned the tube off for the rest of the night to regroup in the am. 


I started writing about all the gory details of the day but to be honest it was kind of a blur of doctors and nurses coming in, us explaining what is going on, etc.  The cliff notes version is after the blood work, CT scan, reviews by the resident, the attending (who is a melanoma oncologist), the dietician, and a GI resident the best thinking is that Alli has a case of immuno-related pancreatitis that was most likely caused by the immunotherapy inflaming her pancreas. 


They are attacking this on multiple fronts to try and get Alli back to feeling well.  She is back on steroids to help dampen the effects of the immunotherapy is having on her pancreas.  They also continue to provide her the nausea meds that have worked the best to try and stave off the nausea and have added a patch that stays on 24/7 as well.  They did turn the feeding tube back on but with a different feed solution and have also had her on hydration none stop since this morning. Finally they also put her on a liquid, low-fat diet.  All this trying to make life as easy as possible on her pancreas to calm it down. 


Fingers crossed, knock on wood, any other superstition, she has been feeling better as the day went on.  The nausea isn't gone but has been fairly mild.  She has gotten more used to the NG tube... not sure she would have bet on that early this morning... and has been getting feed slowly since afternoon.  She has also been able to have some chicken broth and jello as well and keep that down.  We may be in here for a few more days but lets hope this keeps going in the direction we are going now.  She may get to exchange her NG tube for a smaller version that is kept in while she is at home to help make sure she is getting enough nutrients in her diet until she is eating a full diet again. 


More to come but as with last night please keep the good thoughts and prayers coming!


-B

Hospital Stay

Unfortunately Alli's stomach just does not want to cooperate even with the steroids and a couple different medications we have tried this week.  Since the new meds still weren't making it to where she could eat more than a couple bites a food a day we decided to admit her to the hospital to try and get her body some nutrition.  Definitely not where we wanted to be but hopefully this will be the first step in getting her nutrition levels up and her body recovering to where she can get back to eating more normally.


So off to the ER we went this morning.  We originally had thought she would get a TPN line that would give her nutrients directly into her bloodstream.  After talking with doctors at UW we decided to first try a NG line that has a lower risk of complications.  The NG tube is essentially a small feeding tube that goes through her nose, through her stomach, and into her small intestine.  They then can provide her a feeding solution that bypasses her stomach and hopefully allows her to get more than just a couple bites of food and some nutrition into her body.   


They are also going to do a CT scan shortly to see if they can see anything that would be causing the nausea.  In the NG tube they will slowly start giving her a feed solution tonight and through the night.  Depending on how it takes they will continue to increase the amount through the weekend and routinely check her bloodwork to see how her body is responding to the nutrients.  We'll see how it goes over the weekend and figure out a plan for the next steps and going home. 


Please keep sending us the good thoughts and prayers; we'll take everyone of them. 


-B

Paused

While the last post was sharing some good news, unfortunately I don't have much good news to share today.  Today was supposed to be the 4th and final treatment of the two drug cocktail but we ended up having to pause the treatment as we haven't got over the nausea hurdle and add a steroid to the nausea meds Alli has been taking. 

With Alli's clear brain MRI last week and her bloodwork coming back mostly normal this week the nausea can't be traced back to something in her brain (thank you) or to the treatment meds causing some issues with a gland or other organ.  Since the nausea got progressively worse as she went through the first three treatments the best idea is that the nausea is an acute reaction to the drugs themselves.  Adding the steroid will dampen the effect of the drugs but hopefully also will allow Alli to get past the nausea and get back her nutrition level. 

The decision to not do the treatment today was a tough one.  While the bloodwork came back mostly normal, the one part that didn't come back normal was the one that was correlated to her nutrition level... kinda obvious that one might be in the tank when she has gone almost 3 weeks without eating/ drinking very much.  And with nausea getting worse with every treatment and with how bad it is already it was hard to picture getting worse and getting through it without going on steroids anyway.

So the plan is for her to go on the steroids/ nausea drug combo to try and kick the nausea away and come back in 3 weeks to take the 4th dose.  There will be a taper down like last time with the steroids but it will be based on how Alli feels with the nausea, not on a blood level like it was before.  Part of the thinking was getting her back to eating and out of this hell, but also if she had the 4th dose and then it got worse we might be on the steroids anyway.  Hopefully this allows her to get through this nausea cycle and then allows her to get the 4th dose in 3 weeks. 

Alli did also want to pass along a thank you for all the kind messages she has been sent.  While she's hasn't been able to reply she says she hopefully will be able to get to them as she exits this nausea hell.   

Also, thank you for all the good wishes for Kimmy.  She was discharged from the hospital on Saturday and is recovering well from home. 

-B

Some Good News

When you get good news you have to share it, even if your exhausted and needing to go to sleep.  Originally we thought we would have to wait on the results of the MRI of her brain until Monday when we have her regularly scheduled doctor appointment.  Well we got a phone call today from the nurse and she said that Alli's MRI came back normal... woo hoo!!!!

While that was great news to hear, Alli's nausea decided it wanted to put a damper on the celebration and came back in full force today.  The new meds we got yesterday really work on the nausea but also make her pretty loopy and very drowsy which doesn't work for her during the day.  We got a half-dose to see if we could get to a happy medium.  Here is hoping we can soon find the right combination and sequencing of meds to get the nausea away without putting her into a drowsy state that seems to be eluding us right now.

-B