Monday, September 19, 2016

round 2 in the books

round 2 is in the books.

though my bloodwork appointment was at 8am, they didn't call me back until 9am so the day was off to a long wait.

when they prepped the port for the needle and bloodwork, my chest was still really sore even with the numbing cream. so they gave me a shot of litocaine first and that helped. it was a very odd feeling to have the port needle go through my chest, hard to describe, but unlike anything i have felt before. and it wasn't super fun, i can tell you that. but it should get easier once my port area heals up some more and isn't so sore.

my oncologist is not currently worried about all of the swelling since my kidney and liver are looking good. if i start to have some other side effects (i will spare you), then we might be worried my thyroid is having issues and that would likely show up in my bloodwork anyways. so he gave me the green light for treatment.

we will likely go through a couple more rounds of treatment (if my liver cooperates) and then do scans. if we are seeing that the tumors are shrinking, then we may stay the current course. if the tumors are the same, then we may introduce the second drug back in (at a lower dose) and see if my body can take it.

the infusion went pretty much as planned for the day. i took this picture once i was hooked up and the meds were pumping through my port.

after treatment, we grabbed some food and then we came and i crashed for a couple of hours.

long day.

but a good one because round 2 is in the books.

and hopefully those tumors are getting worked over as i type this.

thanks for all of the love, prayers and support.

we couldn't do this without our village.

that much i know for sure.

goodnight all, and have a good tuesday.

Sunday, September 18, 2016

round 2 (hopefully)

round 2 is scheduled for tomorrow.

we will see how it goes.

8am bloodwork.

9:00 oncologist appt.

9:30 counseling.

10:30 infusion (if bloodwork cooperates).

i am really hoping that my liver is going to cooperate with me tomorrow and i will be able to get another dose.

but we shall see. as i have learned over this summer, my liver has a mind of its own (and the fact i haven't had one taste of a cold cider since may in order to keep my liver as healthy as possible doesn't seem to make it behave either. which is pretty frustrating at times all the time).

in the meantime, the side effects seem to be consistent now with swollen ankles/feet, pretty constant muscle aches throughout my legs, some other swelling that seems to be sticking around, and this last week brought some waves of nausea during some of the days. i might be imagining it, but it also seems like a lot of my hair has fallen out in the last week, so we will see if this is an unusual week or if that is a sign of things to come (or, to lose).

the area around my port and the scars is still really tender and hurts. so i am still loving tylenol and nursing my left side a bit. you should see me in the morning trying to get up and moving, between my sore left side and my legs, it is quite a production.

and oh yeah, the other side effect, tiredness.

this weekend i pretty much just listened to my body and rested as much as possible. slept in. took naps. got in a lot of sleep. i think my body was telling me that it really needed some time to just rest. so i listened. which is hard for because if you know me well, i am not usually sitting still and i like crossing things off my to do list like no one's business.

but, i have also realized over these last months that i need to really give myself some grace. if things don't get checked off the list, that is ok. they will be there tomorrow (and the next day, and the next day). and that is ok (even if it drives me bonkers which is where the grace is trying to come in).

this weekend i was able to go out and cheer on my awesome friend jen who was walking 60 miles over three days to raise funds for breast cancer research in memory of her beloved aunt and many others. for about three hours, i watched a majority of the 600 walkers walk by and cheered each and every one of them on. every one of those people was walking because their life has been touched by cancer, whether it was the individual directly or someone they loved. i did that walk twice and i know how hard it is. i also know how emotional it is. but there is nothing about cancer that isn't emotional. there was no place i would have rather been on saturday, regardless of the fact that it was so windy and cold outside. i was just cheering in that weather, they were walking 20 miles in it. i had zero room to complain. is it hard to be at events like that for me? absolutely. will i choose to do it again and again? absolutely. because when your friends show up to get in the fight, so do you.

jen has done this walk numerous times and has raised over $25,000 for breast cancer research. one word: hero.

earlier this week i saw this kal barteski print and it says it better than i could. so of course i bought myself one. and i know exactly where i am going to put it so that i can see it every morning. "you will want to give up. don't." i am not planning on it.

monday is my brother's birthday (you know, the one who stalks my bedtimes according to the times i post blogs;)), so i am pretty sure that means that all will go well tomorrow because he is going to bring me good mojo.

so happy birthday to my awesome brother, and to the rest of you, happy monday - i really hope it is a good one for you.

anywhere i fight, you fight.

round 2, we are coming for you (insert fist emoji here).

Monday, September 12, 2016


i know that i have said this before.

but man, i have been so tired since friday.

i spent a lot of the weekend sleeping because i just could not stay awake. pretty sure that it was my body's way of saying "whether you like it or not, you are going to rest. right now."

in terms of the side effects, from the port, i am still pretty sore and am taking tylenol on a regular basis.

the area around the incisions and port has been really itchy, and though i barely touch the area, it is so odd to feel that port inside my body. i am definitely not used to that, and may never be. that has been a harder adjustment for me than the scars and the healing.

i woke up sunday with my eyes almost swollen shut, i think that is from the treatment. that got better as the day went on. but i have quite a bit of swelling in my face and my ankles and feet still. it is crazy how much my ankles and feet hurt from the swelling.

so the list of aches/pains go on and i will admit, it is all pretty frustrating at this point. i think that i would trade nausea for all of these other side effects. yep, they are that frustrating. they wear me down much more physically and emotionally than the nausea.

my next treatment will be next monday the 19th.

in the meantime, while dealing with all of the above, there has of course been my fair share of joy.

watching the dream team scientists on the stand up to cancer show on friday night and feeling encouraged by the stories of people dedicating their lives to finding cures. getting some laughs in with my parents. a gluten free scone (thanks hooch for the recommendation). time with barrett and malena. neighborhood movie night while watching ice age with friends. celebrating the upcoming arrival of my good friend's baby girl and seeing her happiness. having friend's laughter fill the walls of our home. feeling so damn thankful that my college days brought some of the girls that i love the most. sleeping (yes, there was joy in that). opening happy mail. the awesome lemon bars that my mom made (i could have ate the entire pan. by myself. in like five minutes flat. seriously). enjoying have flowers in our kitchen. did i mention the lemon bars?

so we will see what the upcoming days will bring and how i will feel. i can only guess on that, and at this point, i am not going to because i am sure that i will be wrong one way or another.

i hope that you had a great start to your week, and i hope that it has some fun and magic ahead for you.

we can all use some of that.

onward we go (slowly because of the ankles).

Friday, September 9, 2016

mission accomplished

today was mission accomplished.

the above picture is right before i went into the surgery room.

i had an iv in my arm (which you can see sticking out from my arm), answered all of the questions, and got the overview from the nurses one more time on the port. the picture below shows what a port looks like (the purple gadget, not the water bottle top;)) but it is just a teaching tool so the actual catheter inside me is longer than that one.

once i got into the room they gave me the sedative and i was conscious throughout the procedure but i don't remember much at this point. after the procedure was done, they wheeled me into a room for a chest scan to make sure that the catheter was placed where it was supposed to be.

the doc inserted the port on the left side of my collarbone area since the right is already scarred from my first surgery. so now i have scars across that whole area.

i then spent about half an hour in recovery, and finally got to have a little bit to eat and drink.

i still had the needle in my port as expected and i was so sore already that i chose to just wear my surgery gown around scca under my coat because i knew that i was going to need it on anyways for my treatment. yes, i know, pretty great fashion statement.

i hung out in the café with my mom and dad and barrett for a while and had some more food. and of course i had a green tea.

then we headed up for the infusion. that took about 2.5 hours when all was said and done. i slept through most of it because i was - and am - so tired from the sedatives they gave me this morning. oh, and the lack of sleep last night might be adding to that as well;)

here is what things will look like in treatment for me from now on with my port (minus some of the extra bandages from the procedure today).

that yellow device is the type of needle that they will put into the port to do the infusion, draw blood, etc. before going in for infusions, i will have a numbing cream on that will minimize the pain from the needle being inserted through my chest to get into the port.

obviously, i am going to take it very easy tonight and will likely sleep through most of it. but i will stay awake from 8-9 to watch the "stand up to cancer" event even if i have to keep my eyes open with toothpicks.

i will be sore for the next couple of days, have restrictions on what i can lift, still can't drive for a while, and still can't make any big decisions (i tried to convince barrett that i should retire but he doesn't seem to be going for it) due to the meds.

have a great weekend all, and thanks for all of the good vibes, prayers, and support. we felt them and carried them with us through this long day.

we made it through another round.

anywhere i fight, you fight.

Thursday, September 8, 2016

here we go

oh friday.

if all goes according to plan, i will get a port put in my chest tomorrow and i will start treatment again.

since some of you may (luckily) not know what a port is, i thought that i would give some information on it. if i am not educating you as i go then i am not accomplishing part of why i write in this space.

the port is a device that allows fluids or medication to be entered into my blood stream, it also allows them to draw blood as well. the port is implanted under my skin and is a small disk-shaped device with a silicone center that is self-sealing.

the port is placed in the upper chest area (hence the picture above) below the collarbone. it will be visible as a raised surface under my skin. there will be two incisions, one about 1 inch above the port and one by my collarbone. then they connect the catheter (the tubing that is attached to the port above) internally into my bloodstream near my heart.

i check in tomorrow at 9am and the procedure will start around 9:30 or so. they will sedate me (thank goodness) for the procedure and i should be in recovery by about 11am or so. depending on how i feel, i may be able to leave the recovery area around 11:30. i will then have a counseling appointment (that may be interesting depending on how loopy i am;)) and then i will check in for treatment at 1:30 and that should last about 90 minutes. apparently they are going to leave a needle in my chest after they put the port in since i have an infusion tomorrow. so that should be interesting to see how that plays out as i move from one appointment to another.

so tomorrow will be a long day for sure.

and it will be an emotional one.

getting the port in will go ok, i know that. but the process of needing to having that put in is emotionally tough. getting to start treatment again is the goal i have been working for, but the fact that i need treatment and the anxiety over what the results will be in the long run are tough to think about.

but this whole thing is tough, right?

tough is cancer's middle name.

i guess tomorrow, it will be time again, to make fighter my middle name.

here we go again.

time to pick up the gloves.

anywhere i fight, you fight.

++ reminder, tomorrow night is the "stand up to cancer" event on tv. i will be watching. i hope you will be too.

Tuesday, September 6, 2016

next steps

long time, no write.

i am going to keep this one short tonight because i am (shocker) really tired and want to get some sleep.

i wanted to give you a quick update on my appointments today.

i had a scan today and it showed that all of the spots (minus the nodules) have cleared off of my lungs. which was good news. so it was likely walking pneumonia or some other type of infection i had and the antibiotics took care of it.

the nodules on my lungs did not increase in size since the last scans which is also really good.

so treatment will be a go on friday.

on friday i will also go through a procedure to have a port put in my chest so that from now on my treatments, blood draws, and contrast injections can happen through the line connected to my port instead of having to get my arms poked each and every time. i will explain about that procedure and the port more in another post this week.

so friday will be a big and long day.

besides all that i have going on friday with my appointments, it is also the day of the stand up to cancer show on friday night. i hope you will watch, and if you can, donate.

here comes wednesday. make it a good one.