Monday, December 11, 2017

long monday


today was a long one as to be expected.

a couple of hiccups along the way, as to be expected.

bloodwork went as expected. but when we met with the trial team, they told me i had to continue to fast until after my infusion was going. so i didn't get to eat until 12:30 which isn't a huge deal, but i was so hungry by the time that i could eat.

in total, two rounds of bloodwork from my port, two rounds of ekgs, one nivo infusion, one iron infusion, one round of oral meds, waiting for test results, four rounds of vitals, lot of warm blankets, and when all was said and done - we were there for about 7.5 hours by the time we walked out the doors. 

we talked with my counselor for an hour, and i am not going to go into what we talked about (at least not yet anyways), but i can tell you that it was a tear filled hour. it was emotionally exhausting but good at the same time. good in that i said some words that i haven't been able to say yet, and she gave us some good ideas of things to talk about and think about as we move forward. let's all keep our fingers crossed that this counselor doesn't move on me, or i might have to stalk her and go where she goes. for reals. but not in a scary way;)

i fell asleep on the way home. sat on the couch next to my mom when i got home, fell asleep again, and laid down with my legs across her like i did when i was a kid. i was lights out.

up for the rest of the evening as i have to take  my second round of meds at 10:30pm since i took my first round so late in the day. brutal at this point as i am so tired. but it is what it is.

at the same time i was getting my infusion, my friends michael and jennifer were we at UW as she is having her latest round of scans to see what the cancer is doing. hopefully it is doing nothing and shrinking or at least not growing. they get their results on friday. please send your love and prayers and mojo to them all week as we need those results to be what they want them to be on friday. thank you (insert big heart emoji here).

well, i am off to eat now so that i can take my meds. 

thanks for all of the support and good thoughts ---- and thank you especially for sending them to michael and jennifer. 

anywhere i fight, you fight - and today we put in one hell of a round. you can tell by those kick ass gloves that we weren't messing around. xoxo



Sunday, December 10, 2017

it's one of those mondays


"i like living.
i have sometimes been wildly, despairingly, acutely miserable, racked with sorrow;
but through it all i still know quite certainly that just to be alive is a grand thing"
(agathie christie)

yep, it is one of those mondays.

treatment day.

but due to the trial, i have to fast for this one.

bloodwork starts at 7:40am.

then two ekgs at 8:30.

then doctor appointment and meet with clinical trial lead.

then infusion of my drug should start around 11:30.

then i take my trial drugs.

then my infusion of iron around 12:30.

then either home to rest or work, depends on how the day goes.

the gloves above are new boxing gloves that were sent to me from my friends greta and wallace in new jersey. greta is also a stage iv melanoma fighter and is now home with hospice care. i have wrote about them many times and recently in this space. please continue to send them all of the love and prayers you can. they sent me these gloves and told me to keep on fighting. 

so tomorrow i will pick up these gloves and put them on and officially walk back into the ring. although i have a couple of weeks in on the trial, i don't think know i was not fully ready to pick up any gloves again.

but tomorrow i will.

for wallace and for greta and for their son.

they asked me to keep fighting, and one fighter doesn't let another fighter down.

i had a smaller pair of boxing gloves that i would take with me to my appointments, scans, etc. when my sister-in-law kim went through her surgeries, i gave the gloves to her because i knew they belonged with her at that time. she eventually gave them back to me when we knew things weren't going my way and i just recently gave them to a boy i know who is fighting crohn's disease and has to go to infusions too (which is only a small part of what he is going through). i figured they belonged to him now since he has had to join the fight club and needed some battle gear of his own to take to his appointments. as i said above, fighters stick together.

so bring it on monday, you will be tough but i will be tougher.

anywhere i fight, you fight.

here we go again. xoxo






Monday, November 27, 2017

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

Sunday, November 26, 2017

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.


Monday, November 13, 2017

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









Sunday, November 12, 2017

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

Monday, November 6, 2017

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