down time

“all the variety, all the charm, all the beauty of life is made up of light and shadow”                

                                                                      (leo tolstoy)

this last week flew by quickly as they all seem to do these days.

tomorrow morning we are heading off for a family adventure for a few days with some friends.

i am looking forward to some down time. no to do lists. no action items. no schedule. no work emails. no late nights or early mornings trying to balance (spoiler alert, there is no true balance) work and personal life. no errands.

just time to read books. time to swim with my little mermaid. time to go on rides and have fun. time to just be together. time to laugh. oh yeah, and maybe some nights of good sleep, that would be pretty great too.

this upcoming week will be the first week since the start of june that i do not have one doctor related appointment. it has now been essentially three months of having at least one appointment every week. i can tell you that i am very much looking forward to an entire week of not being poked by needles and not having any appointments. yes, that will be a good part of this week as well.

i am finally off of the antibiotics and i am happy about that. i have had a lot of swelling in my legs and feet so i am hoping that will start to subside now that i don't have to take those anymore. i had some periods of dizziness and nausea but all in all those meds didn't end up making life too rough on me. i am thankful for that. the bruises on my arms from the three iv attempts on monday are also starting to fade and so my arms will feel normal again.

i hope that you all have a great week, may it also be filled with fun, laughter, and some good sleep for you as well.

take good care. xo

a long monday

well today looked different than what i was hoping for.

i should have known that things were not going to go my way when it took three times and three nurses to get my iv into my arm in the morning. it took 45 minutes to get the iv in, not a fun start to the day.

when we saw my oncologist, he started out by saying "things with you never seem to go easy" and i knew in that second that we weren't going to start treatment today.

he said that the results from the scan showed most likely an infection, which we knew from what the attending doctor told me last week which is why i started on the antibiotics.

but what the attending didn't tell me was that instead of being walking pneumonia from the steroids, that it could be an infection from the first dose of treatment. and it would just now be showing up because the steroids would have suppressed the infection for the last three months (can't believe it has now been three months since i first got injected with the steroids). so now with being off of the steroids the infection could be kicking in.

so he didn't want to start treatment until we see if the antibiotics take care of the infection. and the only way to know that is for me to finish the antibiotics and then do another round of scans.

if the scans show the infection is not gone, then we know it isn't walking pneumonia and i am going to be referred to a pulmonary specialist. they may do some tests where they put tubs down into my lungs and basically flush them out to see if they can get traces of the infection to figure out what is going on. doesn't that sounds like fun? um no. if it is an infection, i may need to go back on steroids again and taper down again. does that sound like fun? um no.

if the scans show the infection is gone, and my liver levels stay good, then i will likely start treatment the first week of september or so.

so it was a long day full of every kind of emotion. i had got myself ready to get back in the fight with treatment. then i had a rough go with the iv and my arms were really hurting. then we got the news and i felt really frustrated, angry, disappointed, sad...you name it.

i just feel like i can't get a break.

but i guess the break is that they don't think that these nodules are more tumors. my oncologist thinks we can get this taken care of one way or another, it just a matter of what we need to do and how long it is going to take and what i will have to go through.

so i feel like my emotions are all over the place.

when i got home today, i saw a work email from a man who had shared updates at work about his son who was fighting cancer, his son finished his fight with cancer this morning. that news put me into even more of a tailspin than i felt like i was already in.

ironically from the antiobiotics today i had a rash on both legs and they were swollen. more fun side effects. frankly, it was kind of like the icing on the cancer cake today.

so this day is done, and i am ready to call it.

onward.

we will see how it goes

the side effects from the antibiotic have not been too bad.

thankful for that.

a little nausea here and there, other than that, just feeling really tired.

which is now the new normal for me apparently.

monday morning i go in for bloodwork at 8:30.

i meet with my oncologist at 9:30 to go over bloodwork and scan results.

if the bloodwork looks good, i will start the infusion at 11.

so we will see how the day unfolds tomorrow.

i am just going to take the day as it comes.

here we go.

anywhere i fight, you fight.

you can't make this stuff up

so my doctor's office called early this morning.

my scan results were back.

they showed that both of my lungs were covered with numerous nodules.

but the radiologist did not think that all of the nodules were cancer, he thought that they were indication of an infection in my lungs.

the attending doctor working with my oncologist agreed.

guess what?

i have pneumonia.

yep, as we were hoping was not going to happen, and the reason i took antibiotics for so long, pneumonia founds its way in to my lungs thanks directly to the steroids.

so here we are.

i picked up a new antiobiotic today.

and when the pharmacist came over to give me the consult, she told me the following...

this is a very strong antiobiotic.

they will likely make you dizzy.

and she listed a few side effects i will spare you from reading (they weren't fun for me to hear, they won't be fun for you to read).

and then she said -- wait for it, wait for it -- it is definitely going to likely make you pretty nauseas.

perfect.

because that is what i need more of. nausea. haven't quite had enough of that over the last two weeks.

in good news today, other than the infection across my lungs, it seemed that the tumors did not grow.

which is obviously great news. i would have loved to hear that tumors had gone away, or shrunk, but they didn't grow.

you have to take victories when you can get them my friends.

i will take that one.

so, tomorrow i start on the antibiotics and that sounds super fun based on what the pharmacist told me.

can't wait to tell you all about it.

the pneumonia is probably one reason that i have been draaaaaaaaaaaaging and so tiiiiiiiiiiiiired the last couple of weeks.

night all, have a good wednesday.

we will be half way to friday tomorrow. 

i think that we can make it.

slowly, and maybe with nausea, and maybe a little dizzy, but i think we can.

onward.

breathe in, breathe out

my liver is cooperating.

bloodwork today indicated that my liver is still within normal levels.

yes, super thankful for that.

when the nurse called me, he first asked me if was still in the building, and i thought "uh oh, here it comes" but i was wrong and he only had good news.

so if my liver continues to cooperate, it looks like treatment will be a go next week. well, if my liver cooperates and we don't get some huge surprise from my scan results.

here is the ct machine, this is the new one that i talked about last time. it is much bigger when you go into the tube so feels like plenty of room (though you aren't moving when you are in the machine). then the automated voices tells you "breathe in, hold your breath" until the machine moves back out and tells you "breathe out". that routine goes on for a couple of times and then you hear the whirl of the ct scan doing its work as you lay there.

but, on the bright side, do you see what is on the left side of the room?

yep, a window.

i love this room. it is officially my favorite. they also have the ceiling tile in this room but i don't even care because it has a window.

so today was a long day. after i wrapped up at seattle cancer care, i headed to the office. i really wanted to head home and take a nap but that just wasn't in the cards for me.

so this girl is tiiiiiiiiiiired and heading to bed (my brother will be super happy about that).

i hope that you all had a good monday, or as good of a monday as you can have. and if you weren't going through cancer ct scans, i would say it was a good monday;) xo

the aftermath

coming off of the steroids has been rough.

tuesday and wednesday i was in nausea hell.

it was like as soon as my body realized that i didn't take steroids on tuesday morning it immediately went into full on nausea mode. those two days were brutal.

thursday and friday were better, i didn't feel great but i felt ok.

almost every night i had cramps usually around 2-3am, so apparently, my body felt like we needed to keep those going as well.

saturday morning i actually felt ok (which meant i kind of felt good compared to the rest of the week) and then around noon, the tidal wave came rolling in.

i felt like total hell for the rest of the day.

if you could have seen me around 6pm, i had my pajamas on, was on the couch with my favorite blanket,and  had my hooded sweatshirt on and the hood around my head. that is basically what my "i am waving the white flag" look is like because i just couldn't do anything else.

today i felt ok, just extremely tired and like i got my you-know-what kicked. maybe because i have for the last week (and all the weeks before that).

yesterday i thought about how i had thought to myself before treatment started in may that i would never feel as good as i did before i started treatment. that was an understatement.

so tomorrow i go in at 7:45am for bloodwork and then i check in for scans at 8:20. and then i have a counseling appointment after that. it will be a long morning and it will all be over probably before 10am. and that will make a long day for this kid.

we get results next monday so this will be the longest we have ever waited for scan results. ugh.

but that gives a full week to send your mojo, prayers and good vibes for good scan results.

anywhere i fight, you fight. xo

the day has come

i had bloodwork this morning.

my liver results were good again, so i get to go off of the steroids as of tomorrow.

yes.

super happy about that.

also a little anxious as i am worried that my liver will start to ramp back up when i am off the steroids. but hopefully not.

so the plan is that i will go in next monday for bloodwork and scans. the scans will set the baseline for treatment. hopefully we see that the tumors have shrunk (dream scenario). if not that, hopefully the tumors have stayed the same. what we don't want to see is that the tumors have grown.

we will get the results from the scans on the 22nd. if my bloodwork on that day is good, i will start treatment again that day. i will start on one of the drugs at a lower dose than we did before, if that takes and my liver doesn't go sideways after some time, we will introduce the second drug back in at a lower dose.

my treatment will be every two weeks. indefinitely.

i will get a port put in my chest prior to the second treatment at the beginning of september.

i would say that i am probably feeling about a million different emotions around the update today. relief. anxiety. anger. sadness. scared. you name it.

definitely more to come on all of those thoughts. but for now, i am going to head to bed. i am really, really tired. it will be very odd to wake up in the morning and not have taking a pill be the first thing that i have to do to get my stomach ready for the steroids, followed by not having to take the actual steroids. i almost think that i need to hide them as it has become such a routine for me that i might accidentally take them out of habit alone.

so more soon.

thanks for sticking it out with me as i roll through these ups and downs, and all the in betweens.

it has been one hell of a ride.

one that i never wanted a ticket for.

monday

early morning to head over to seattle for bloodwork.

my liver levels were still good today so i got the green light to drop another level of steroids starting tomorrow.

very happy about that.

will be even happier when all of the side effects start to go away.

honestly, i am pretty damn tired of all of the side effects and am feeling really exhausted and frustrated.

every time i look in the mirror, move my legs, do most anything i am reminded of the side effects of being on these steroids for two months now.

i am really, really over it.

if i drop off steroids next week, i expect that treatment will start around later this month.

which will mean that i will only have probably about two weeks between steroids and treatment. which likely means i will still be dealing with the side effects of the steroids working their way out of my system when the side effects of treatment work their way into my system.

but i am too tired, my muscles are too tired, and i am feeling too blah to think too much about that at this point.

but i am not feeling too blah to ask for your prayers, good vibes, and love for our friend kevin who is in his own fight against cancer. he is in the hospital (where he has been for over a week) recovering from an extensive surgery last week. so as this man who was the best man at our wedding, is a great husband, an awesome dad of two little kids, makes his way through his own fight, please send some love and good energy his way. it is beyond frustrating to me that yet another friend is having to make their way through all that comes with those words "it is cancer". so damn frustrating i can't even put it into words. so thank you for sending your love his way, i know that it will help as he moves through his recovery and whatever may come next.

good night, hope your tuesdays are good ones.