clinical trial, day one

today was a long day to put it mildly.

we got there just before for my litocaine injection, to have my port needle put in, and initial bloodwork.

we then met with the doctor and the clinical trial lead. they had forgot to tell me that i had to fast before coming in today. luckily i had not yet had breakfast because we usually eat there after my bloodwork and because I could barely get myself out of bed this morning i was so tired from a long night of nightmares.

so we went over more specifics on the trial.

i have to take 8 pills a day, in addition to all of the other ones i am already taking for my anxiety, lack of potassium, swelling, etc.

4 in the morning with breakfast (and it has to be a real breakfast, not a muffin as I run to the car).

4 in the evening with dinner (same drill as breakfast).

i have to write down the time and date of all the pills i take and if for some reason i miss a dose. i have to tell them if i have any issues or something seems off. i got my number, my number that will track me through the trial.

they say that the most common side effects in the first month or two of the new drug is that patients have problems with their eyes. bright colors hurt their eyes and colors seem off to them. they say the eye issues eventually fade and then fatigue is the number one offender which is already my number one offender. so we shall see how it goes.

after we got through that, they got my infusion moved up from 5pm to 1:30pm (or we would have likely been sleeping there it felt like). it seems that from now on my appointments will all be late in the day as the clinical trials have their own time slots and wing on the infusion floor so my normal schedule will shift from mornings to afternoons/evenings.

finally when the infusion started (around 2:30), i was able to eat. i was starving by this point. when that was over, an hour later, i took my new meds. then i had my iron infusion which lasts about 30 minutes. after both infusions, they flushed my port which takes about 10 minutes each time.

then we had to wait 2 hours after when i took my pills so they could do an ekg and make sure that my heart was normal compared to the ekg they took before i started the trial. 

it was so they let us head out at 5:45pm.

hence the long day.

for a while now i have tickets tonight to see pete souza talk and show pictures from his new book with some friends. it was amazing to see those pictures and the stories behind them - we saw just a glimpse of the 1.9 million pictures he took during those 8 years. incredible. the book is absolutely gorgeous.

so i could have headed home and gone right to bed because i honestly was that tired. but i decided to go anyways because i had been a cancer patient for about 10 hours, and for just a few hours i wanted to just be alli. i guess i also wanted to give out a little "f*&k cancer" vibe to the fates and keep the plans i had regardless of a day that kicked my ass.

so now i am home, writing you all this update on the day, and now headed to bed which sounds pretty damn good (minus the nightmares that i am sure are waiting).

thanks for all of the love, prayers and good vibes for today - i needed them and carried them with me. today was not an easy day by any means emotionally or physically, and i needed all of the mojo i could carry with me. 

anywhere i fight, you fight.

rest up, we are back at it in two weeks to do it all over again.

xo

clinical trial starts tomorrow

i hope that you all had a great thanksgiving holiday weekend, we definitely did.

can't believe that december will be here this week. totally crazy.

tomorrow i will go in at normal time at the crack of dawn for bloodwork.

we are supposed to meet with the clinical trial staff and then also meet with my regular doctor's assistant.

i should get the second drug tomorrow that I have to start taking.

i should also have my infusion.

we will see how it all goes.

i am expecting a long day.

i have been pretty quiet on here as I think that I am still letting it all settle in.

plus, we have since celebrated malena turning 9 and barrett turning one year older (i mean one year closer to the big 40;))

so, life has been full of celebrations and traditions.

i won't lie that those are so bittersweet for me, and maybe no year more than this year which has my anxiety wanting to come on full tilt. but i just keep taking it one day at a time and trying to keep all of the monsters at bay as best i can.

i had two nights without nightmares at my parents house over the break which was so nice, i got really good sleep. but the nightmares come back with a vengeance last night and i am so, so tired tonight. if they don't stop soon, i am going to need some nighttime med help again as no sleep is clearly not helping with my battle with fatigue.

happy monday all, here we go.

anywhere i fight, you fight. xoxo

important ps) please keep sending your love to wallace and greta and their son as she continues her fight again melanoma in the comfort of her home.

this day by the numbers

(print by https://www.lettersandcompany.com/)

i am going to choose to believe that is true which is why i bought the print.

this was one hell of a long day.

injection of litocaine to numb my port area.

placement of needle into my port.

bloodwork.

walk through of all the clinical trial paperwork with my doctor and the research staff.

asking questions.

signing my consent form and all that comes with agreeing to that with my signature.

two ekgs of my heart.

one more round of bloodwork.

infusion of my normal drug over an hour.

ten minute flush of my port system.

infusion of iron over 30 minutes (iron levels are low).

another ten minute flush of my port system.

waiting 30 minutes at the pharmacist for refills of my anxiety drugs.

2 hours of work in the office.

3 meetings.

home.

dinner.

homework.

sauna appointment.

writing this post.

going to bed. hoping for no nightmares.

it has been a long one.

thanks for all the love and kindness.

anywhere i fight, you fight.

xoxo

the papers and round 16

"don't let your sorrows come higher than your knees"

(swedish proverb)

well we read the stack of clinical trial papers tonight. i put it off as long as i could. intentionally.

it was overwhelming.

i am not going to go into the details because i don't want to look at them again tonight or really think through the details anymore than i have already had to.

i can tell you that i have heard the term "progressive melanoma" used when referring to me more times than i would like in the last two weeks.

i do take comfort in that this trial is research that will hopefully benefit future patients, although i wish that i didn't need to do this, someone did it for me when the FDA was trying to approve the current drugs i am on. if patients don't participate in trials, new medicines aren't tested and can't get approved. but it is hard nonetheless.

so on this day that we celebrated my girls birthday early with her friends and laughed through the afternoon, the day ended with me feeling liking i was carrying the joy of that in one hand and the shit of everything else we are going through in the other. both hands felt more than full.

i am not going to lie. i don't feel like picking up the boxing gloves yet. i am too scared and too sad. but i will soon.

so tomorrow will be bloodwork, ekg, more bloodwork, infusion and who knows what else. we will see what the day brings. hopefully my insurance has cleared for everything to go forward.

i thank you for all of the good thoughts for me.

please also continue to send thoughts and prayers to greta and wallace in new jersey as she continues her fight in their home with help from hospice.

anywhere i fight, you fight.

tomorrow another chapter in this fight begins.

let's hope it is a good one.

xoxo

next steps

"those who can truly be accounted brave are those who best know the meaning

of what is sweet in life

and what is terrible,

and then go out,

undeterred,

to meet what is to come."

(pericles)

i am not yet undeterred in this round but i love that quote.

the doctors office called today.

it looks like i will qualify for the clinical study that my oncologist wanted me to get in.

because it will be too dangerous to take the lung biopsy, they will waive that.

i will have to read through the stack of papers this week, and next monday, formally give my consent to participate in the study.

i will be part of research.

hopefully that benefits me directly. if not, it will hopefully help the doctors to benefit patients to come in the future to fight this cancer. that is an overwhelming feeling that truly hit me when they called today and were talking me through what is to come after i sign consent to be a research patient.

bloodwork, heart ekg, etc. the tests that will establish my baseline as a patient in their research study. those all come next monday.

i am not sure when i will be able to bring myself to read those papers, but it will happen before monday. 

it has to.

monday will be a long day. i will have my normal bloodwork and infusion. i will have all the tests they need me to have for the study. i have to meet with the clinical team. they expect i will start the drugs for the study during my next infusion.

but that all depends on if insurance will approve it. keep your fingers crossed on that.

so today was a bit of a rough day. i got the call during a meeting, and i know the numbers that are from scca by heart by now. so i excused myself to take the call, finished the call, took a couple of deep breaths and went back into my meeting because there were decisions to be made. 

and so it goes.

decisions to made. one after another. life keeps moving.

so that is the latest. 

i still don't know what to say, so if you haven't figured it out either, we are still even.

i can tell you that i am scared shitless. i am very anxious. i am worried. i am thankful i qualify. i am worried insurance won't come through. did i already cover being scared shitless?

i found this print (and you should check out their others and the rails that go with them because they have so many great ones - but you can get just the prints too) and i got it to sit by my bed. so i can read those words every morning and every night. 

and hope beyond hope they are true.

it is time for goodnight for me, i hope that the nightmares give me a break tonight - they have been absolutely ruthless. good morning to you, because most of you will read this when it posts in the morning.

have a good tuesday - do something to treat yourself, you deserve it.

november  7th, 2017 will only come around once in your life.

make the best of it. xoxo

i don't know what to say either

"we've got to live, no matter how many skies have fallen"

(d.h. lawrence)

i don't know what to say either. 

so it is ok if you don't know what to say.

we can be speechless together and feel like we are on equal ground.

honestly, i still think that we are still in shock about the news that came on monday.

it was the worst case, and while i always know it could come, i hope so hard that it doesn't that when it does i feel totally blindsided and devastated.

we didn't hear back this week on which of the two (or both) clinical studies i may qualify for. and that is ok. i don't think that i could have taken any more news this week. i expect that we will hear more this week. we have two huge stacks of paperwork to go through regarding the trials and consent and what i will need to go through (scans, lung biopsy which my oncologist looked me in the eye and said "will not be fun for you") before treatment starts if i qualify.

i don't know what to do next. what i do know is that i can't sit still.

at times, i feel like i want to get into a little ball and cry and stay in bed.

and maybe one of these days i will. 

but in the meantime, as the quote says, we've got to live. 

shitty, shitty news doesn't stop the clock from ticking and life from moving on. i wish that it did. if you know the magic on how to make that happen, let me know.

so this week after we got the news i lived: we carved pumpkins just like our annual tradition the night before halloween (which was the day we got results - the adults in our family now call this "putting our happy faces on" which means bad news has come but barrett and i haven't had a chance to share that with malena yet), we celebrated my mom's 75th birthday, we went to malena's halloween party at school, we went trick or treating and the adults drank hot cocoa with peppermint schnapps which was so good (highly recommend - my friend halli is the master bartender of those), barrett and i had dinner out at one of our new favorite restaurants, we took malena to the museum that talks about the bored tunnel project i worked on in seattle before the museum closes - we wanted her to learn all about this important project her mom worked on for so many years (which reminds me that i need to tell her that her name is written on the inside of one of the tunnel rings which i got to do as construction started), we ate thai food and watched project runway with my parents, we had girl time at a holiday bazaar getting christmas presents, along with my cousin, niece and sis-in-law (you all know kim) - barrett and i went to see garth brooks in concert and it was AMAZING (all caps so you know that it was just that good, go see him if you can and you like his music), my mom and i went and did a christmas blitz of shopping and hit target early so that we could shop the new magnolia collection which was AMAZING (see above description), we watched snow fall all day at our house, we ordered malena's birthday cake (my girl will be 9 soon, i have no clue how this is happening), and we had some tickle fights and we laughed. i also cried when garth sang 'the dance' and there was no way i was getting through the words "i could have missed the pain, but i'd have had to miss the dance" without tears streaming down my face. that was a given before we even walked into the arena.

so we lived.

i have not been able to respond to all the messages from this week, in part, because i don't know what to say. but i will respond. i haven't been able to acknowledge the mail that i got this week, but i will. i just need a little time to get my feet under me again. but please know that i got the messages and mail, and i so appreciate it.

i definitely feel like i have put the boxing gloves down for a bit, i need some time because i feel like i just got knocked out.

as i have said many times before, no parent should have to talk to their kids about cancer and tumors and treatments and clinical trials. ever. but when you have to, you do - and you wonder why life is so cruel and cancer has to be part of your kids life at all. and you know you will never know the answer to that, but you can only hope that your honesty and sharing makes her feel that she knows what is going on in her family. and she does. and she always will. that is a promise barrett and i made to ourselves and to her without her knowing it. one of the hardest promises i have ever had to make, a necessary one, but one that i wish i never had to fulfill.

i know this knockout isn't for good, and i will at some point soon have to get those gloves back on and get in my corner of the ring to fight yet again.

and i will fight again.

my girl turns 9 this month.

there is simply no other choice.

that much i can say.

thanks for all the support and love, we could not do this without knowing that we have so many supporting us. xoxo