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

Sunday, November 5, 2017

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

Monday, October 30, 2017

results

this is going to be short because i don't really know what to say and am super emotional.


one of my tumors has continued to grow.


so i am now looking at one of two clinical studies for progressive melanoma if i can qualify. the issue with qualifying is that they need a biopsy of the tumor, and the tumor is so close to a major blood vein that it may be too dangerous to take. so we will know more in the next week or two on what my path forward looks like.


please continue to send us your prayers, love and mojo.


anywhere i fight, you fight.


xo


ps) i just got an update from kris that judy is alsmost out of surgery so get sending her and the family all of your good thoughts. xo

Sunday, October 29, 2017

scan results day

monday morning bloodwork starts at 7:40.

we meet with my oncologist and get my scan results at 8:45.

pending how those go, i have infusion at 10:45 if we keep proceeding with infusions.

then i have a psychiatrist appointment at 1.

no matter what happens, it will be a long day.

i have had ongoing nightmares going into these scans and all through the weekend, so it is making it tough to stay awake - but i am also afraid to go to sleep because of what may come. it is hard enough to sleep anyways leading up to scans and results, but those nightmares always come calling just like they always do.

thank you for sending all of the love and prayers, as soon as i am able to, i will post an update on the blog.

please also send judy your prayers and love tomorrow - and her entire family. she checks in at 5:30am for her surgery and so we all hope that it goes smoothly for her and that she has as quick and as healing of a recovery as possible. i will let you know how she is doing too tomorrow when i get an update from her daughter kris. i know they appreciate the love, and i told kris tonight we were all rooting for her family.

also, greta is home now from the hospital and she said that feels a little better being home instead of the hospital (totally understandable) and even ate a cookie friday night (which is  a cookie well deserved). i communicated with her husband wallace over the weekend and told him that i had asked for prayers and love to be sent to them (and i know you all always come through), and i know they appreciate it as well.

anywhere i fight, you fight.

and tomorrow is a big day for at least two of us fighters.

and i am still trying to figure out how to wrap everyone in bubble wrap (see previous post if you have no clue what i am talking about). if you have any ideas, let me know.

here we go again. xo



Friday, October 27, 2017

scan day + prayers

"when the hands of time evict the smile from the apartment building of your face
when you get punched in the esophagus by a fist full of life
remember the human heart beats approximate 4,000 times per hour
and each pulse 
each throb
each palpitation
is a 
trophy engraved with the words 
'you're alive'"

today was scan day.

it started early with a 7:40am check in and it took a couple of tries to get the iv in.

i have been quiet leading up to these scans in this space than normal i think both due to life being busy and and just overall increased nervousness this time around after getting so sick last time.

well, it happened again. within 30 seconds of them injecting the contrast (and giving me less and injecting it slow) i was vomiting just like last time.

so, this day has felt long from feeling so sick. the contrast. the anxiety. being 110% completely exhausted.

but the scan is done, now comes results on monday.

as always, all of your prayers and mojo and good vibes are so appreciated.

i would ask that you also send your prayers and mojo and good vibes to...
+++ my friend who has recently found out her young son was diagnosed with crohn's disease and looked at me with tears in her eyes and wondered what the rest of his life will hold for him. how could her mama heart not wonder that?
+++ my friends greta and wallace in new jersey. greta is also a stage iv melanoma fighter too and today i read the news that she is leaving the hospital with hospice care. they also have a young son traz. we have kept up with each other throughout the years and i am not going to lie. it is heartbreaking to hear the news. i think that i heard my heart literally break and the pieces shuffle around my feet when i have walked around today.
+++ my family members in north dakota that unexpectedly lost their young granddaughter who leaves behind a 15 year old daughter.
+++ my friend kris's mom judy that i have wrote about before on the blog. judy's cancer in her mouth has come back again and she will undergo another surgery on monday. please send her and her family your thoughts on monday.

bubble wrap. that is all that i can think about today. there are so many friends and family that are hurting around me, i wish that i could just wrap them all up in bubble wrap and protect them from all of the pain, loss, and anxiety they are going through. 

imagine how much better this world would be if we all had bubble wrap and could protect each other. 

it would be so, so much better.

thanks for sending all the love and mojo.

anywhere i fight, you fight.

xoxo





Monday, October 16, 2017

14 in the books


today was treatment 14.

my bloodwork was looking good, potassium was low - but all other organs are functioning like they should be. i am so thankful for that.

this morning i woke up and felt like a cold might be coming on and so if that is the case, you wear masks at scca so you don't chance giving germs to any other patient. barrett wore one as well just in case he might be coming down with something but just doesn't know it yet.

this is the only picture i got today, not my usual one that shows me hooked up to the infusion machine.

the reason for that is simple: i was asleep.

i worked this morning (except when in appts) but when i got into the infusion room i just could not do it anymore. i closed my laptop and i was lights out, so damn tired (daily mantra around here).

as we did the check in on side effects, they remain essentially the same just continue to get worse. fatigue (kicking my ass). dry mouth. hair coming out and thinning (no bald spots yet). dry mouth (worse than the sahara). muscle aches and cramps on nights when i am super lucky. dry skin (basically the sahara). and that is just the cancer side effects, not even speaking of the daily fight with my anxiety problems which is a list of issues all on its own.

the next thing up is scans on the 27th and i can't tell you that i am looking forward to those in any way. especially since last time i ended puking all over myself and the room. that is not going to be a fun day. then on the 30th we get the results and decide where to go from there. so scanxiety is already kicking in and i am already getting very nervous for the end of the month.

sometimes being at scca for treatments brings comfort. today was one of those days when there are so many other things going wrong in our world, that i look at all of those patients and caregivers and wish that a cure for all of the cancers could be the one big thing that could be going right in our world. so many sick people there and yet you never hear a voice raised, you see smiles, you see people offer their chairs to others, you see others giving the knowing look of "me too" as you pass them on the way to your infusion room. i am almost always one of the youngest patients there on any given day. my nurses have told me that i am one of the only ones who work while i am hooked up to the infusion meds (obviously that didn't happen today), much less work full time while going through treatment. and so sometimes i wonder if i am doing this fight the way i should be, will i regret the way i fought at some point in the future (like not worked, took time off while going through treatment, etc.). but that is the deal, there is no right way. there is no wrong way. you just get through it the best way that you know how.

you just wake up and fight however you can. and as long as i keep doing that, i think that i am doing pretty damn good minus everything that totally sucks about this entire situation.

goodnight. i need to hit the hay, i have more fighting to do tomorrow. and the day after that. for as long as it takes.

anywhere i fight, you fight.

xoxo



Monday, October 2, 2017

13

"if you happen to find yourself in the place
that hangs on the cusp of just this side of breaking,
hold on,
and ride that sweet spot until it spits you out or swallows you whole,
either way,
you're coming back filthy,
and filled with the answers you never knew you were seeking."
(nicole lyons)


the nurse getting the equipment ready to numb my port area and put the needle into my port. this is how my day starts on treatment days.

13 is in the books.

my bloodwork is holding steady.

i have one more round, then scans on the 27th, then scan results and treatment on the 30th.

i will write more soon but i am tired. i had to work after treatment, then headed home, then to a girls scouts mom meeting, and now to bed.

a long day.

but, my organs are cooperating, so long day or not, i am super thankful for that.

anywhere i fight, you fight.

xoxo

Sunday, October 1, 2017

treatment 13 here i come


 "...and all at once, summer collapsed into fall."
(oscar wilde)

well, hello october.

you sure showed up fast, but it isn't a surprise since this year is flying by for me.

i got our front porch decorated today and i consider that to be a major win for the weekend.

weekends for me are now about slowing down, sleeping in, taking naps and enjoying some down time. that doesn't mean that there isn't work, and anxiety, there is definitely both - but more and more i know that i need the weekends to give my body a chance to recharge a bit from the week days which seem to be non-stop from the moment i wake up.

i have been having nightmares again, not every night, but since this is a scan month, that is not a surprise. nightmares don't help with the fatigue, i can tell you that.

so i will let you know how tomorrow goes, hopefully the liver and organs are holding strong for treatment number 13.

anywhere i fight, you fight. xoxo

ps) jill p - thanks for posting the awesome quote above today - love it. xoxo

Monday, September 18, 2017

round 12 is in the books



round 12.

in the books.

bloodwork looked good so all systems were go.

met with my psychiatrist for an hour, thank goodness for her, she doesn't make me feel like i am totally losing my mind and the baby steps i am taking (which seem like bigfoot steps to me) are helping to slowly start to deal with the anxiety. i like her, she makes me realize that i am starting to find some coping mechanisms that i would never realize on my own.

this time i was so tired that i slept every chance i got this morning. normally i would work through treatment and the waiting times in between appointments. not today. i was lights out every chance i got and and then barrett and i headed for some lunch and then to work for a couple of hours to round out the day.

on saturday night i could barely keep my eyes open around 6, we had a busy day. so i told barrett i was going to lay down for about half an hour and to come and get me up. next thing i know it was 8am sunday (he had come up and then i went right back to sleep). i slept straight through the night which apparently i needed.

but in the morning when i woke i had some major anxiety because i felt like there things that i should have got done saturday night. but i was able to shake that off after i just calmed myself down a little and my meds started to kick in.

i hope that your weeks are all to great starts. this one is going to be a long one for this kid with work, so off to zzzzzzzzzzzzz i go.

anywhere i fight, you fight.

and this year has sure been a hell of a fight with myself and with the tumors.

xoxo




Friday, September 15, 2017

you all are magic

"in order to kick ass you must first lift up your foot"
(jen sincero)


you all are magic.

we got good news on both counts today. and i love you for that.

beth got news that the spots on her lungs are stable, she does not go back for scans for 6 months. woohoo!!!! 6 months can feel like getting your life back for a while. so, so happy for her.

mary also got good news today - her doctor feels that everything is stable and she does not need to have another ultrasound until january. woohoo!!!!

so happy for them both, great news for a friday. a double whammie of good news.

thanks for all the love, mojo and prayers. they worked. you all are the best.

have a good weekend, i for one will be breathing way easier. and i know beth and mary will be too.

xoxo



Wednesday, September 13, 2017

kick up the mojo between 9 and 11am

ok, kick up all your good mojo tomorrow between 9-11 because that is when beth goes in for her scans. which we all know are going to be totally clear, right? right.

thanks for all of the love, mojo and prayers, i know that she really appreciates it.

here is how she is feeling tonight in her own words, it is her own story  to tell after all....

love you beth, you have got this, these scans will be clear, and you will keep on fighting.
xoxo

"Scanxiety"

Journal entry by Beth Peterson
Well they are here already.  Tomorrow morning are the scans. I go in at 9:40 to drink contrast and get my labs, scans at 10:40.  I remember from last time that having scans at SCCA was nicer than at UW Medical Center, less crowded and chaotic.   A little place to recover after with snacks.

I am glad my parents are here. They got in last night.  We played a bit this afternoon but now the realness sets in.  What they are really here for. 

I have been sleeping ok with help...but not as great recently.  I am nervous and anxious but it is different than last time. If I really stop to think about what the results mean it terrifies me.  Because each time I go in it can impact my future.  And I keep thinking about how this doesn't End for me. I will be scanned for a long time.  No matter what they find.  So my hope and prayers are for no growth and in fact shrinkage of those spots.

I will let you know how tomorrow goes. Thank you for your love, support and prayers. 

Monday, September 11, 2017

for beth and mary

please send you good vibes, mojo and prayers to my friends beth and mary this week.

beth goes in for scans on thursday and gets her results on friday.

mary has an ultrasound on friday to make sure that the tumors have not come back.

so we need all your good thoughts sent to seattle and to little chute, wisconsin this week.

i know that beth's scans will show no change, and mary's ultrasound will be clear.

i am super smart about these types of things, but i like to have your mojo going for them just as extra insurance.

i hope that you are all having a good week, and to those of you affected by or have loved ones in the path of harvey or irma, our thoughts are with you and yours. xo

Wednesday, September 6, 2017

11 in the books


round 11 is in the books.

bloodwork was good.

scans are on october 27th and results are on the 30th.

thanks for all the love and support.

another one down. 

work your magic on those tumors.

nevertheless, she persisted.

how true that is.

xo

Tuesday, September 5, 2017

here comes round 11

tomorrow will be round 11 if my bloodwork cooperates.

since i posted about round 10 we took a week off of work to go to disneyland and take a trip to bend, oregon. it was our first family vacation in over a year and i think more than well deserved.

when i was in infusion for round 10, my new psychiatrist came in to see me. we had a really good discussion and i really like her so i hope that she stays around for a while.

there were many parts of our discussion that have stayed with me since we talked. but there is one that i probably think about every single day.

since she hadn't met me yet, she was getting the quick story on my background and what led to my severe panic attacks and the anxiety i have been fighting daily since the end of march. so we talked about the current status of things, how i have been feeling due to treatment and my daily battle with anxiety and how that has really turned things upside down for me, how i am still working full time, being a mom, etc. we also talked about how i don't feel like i am doing a very good job at any of the roles that i have. i don't say that to make a pity statement, i say that as part of the daily battle that i go through with my anxiety and the emotional agony that comes along with it.

we were talking about how i am my harshest critic (self admitted) and i have high expectations of myself that everything i do is done well. and that with the growing fatigue continuing, the tiredness from that and the anxiety meds, the other side effects i am dealing with, that i am just so tired that i just can't do many of the things that i want to do or am used to doing before i got so sick earlier this year (and to be honest, in some ways even back to when i was sick last summer on the steroids).

at one point, she leaned forward and looked my right in the eye and said "you have cancer. you are sick. you are going through cancer treatment every other week. you are tired. you can't do everything you are used to doing. you just can't. i am shocked you are even working full time right now."

you have cancer. you are sick. 

those words. i don't think that someone has directly said to me "you have cancer" since the day i was diagnosed. 

and then the tears came.

but she did that to make a needed point. it worked.

because that is so hard to hear but of course i know that. and she is right. i have cancer. i am sick. and i am tired. and i can't do everything i want to do and that frustrates the absolute shit out of me.

so i am trying with baby steps. but it is hard. i slept in late on saturday because i was so tired to only go straight into anxiety the second i woke up because i hadn't got up sooner and started doing something that needed to be done. the same thing happened on sunday but sunday i just about went into a severe panic attack. i had to remind myself (and barrett helped me) that my body is telling me i need to rest. and oftentimes, the weekends are the only time i get to.

it is all so hard and i hope that with time it gets better and easier. the start of school has us back in a routine again and maybe that will help me.

i hope so.

i would love to gain some normalcy of what my life was like before i got so sick. like writing here. one of the things i like the most and never do. so maybe not as much as i used to before i got sick (that is obvious as i hardly post anymore) but more that i have been doing. and maybe that means i let something else go that is less important.

i am trying to figure it all out.

but in the meantime, time marches on and treatment days come.

tomorrow is one of those days.

so onward. one way or another.

anywhere i fight, you fight. xo





Monday, August 21, 2017

round 10



treatment 10 is a go. bloodwork is all looking good.

i have a special good luck charm with me here today, and as her shirt says, "girls never give up".

we got a chance in between my appointments this morning to go out and watch the eclipse. that was pretty awesome to say the least.

now i am in a hospital bed getting my infusion.

i just met with my psychologist and we had a good talk for a long time. we have a couple of things that we are going to try to help with my anxiety and i am going to continue with my meds. the anxiety continues to be a daily fight for me but we are trying to make it better over time.

and after this, we are headed off on a magic adventure.

have a good week, thanks for all the love and prayers and mojo.

anywhere i fight, you fight.

xo


Monday, August 7, 2017

results

i am currently laying in the hospital bed waiting for my drugs to come so that we can start the infusion.


the results of the scans were that the tumors have not changed, no shrinkage. they have stayed essentially the same. there were no new growths that were detected on the scans.


so i am very thankful that there are no new growths, that is a great thing. i am thankful that the tumors have not grown.


i would be lying if i said it is disheartening after all these treatments and the side effects that they have not shrunk at all.


so, i will move forward with this treatment and for the next three months and then we will do scans and see what things are. there is a clinical study going on but i would only qualify if my tumors grow, but they are seeing good results from that study with the meds they are using.


thanks for all of the love and prayers, keep them coming.


anywhere i fight, you fight.


onward.


xoxo

Saturday, August 5, 2017

scans

 
"i'm just trying to be the most courageous collection 
of flaws and ghosts that you've ever seen"
(morgan nikola-wren)
 
 
friday was scan day.
 
it did not go too well.
 
like last time, i asked for an iv to be put in my arm instead of connecting to my port because the contrast moves so much faster through my port and through my body than through an iv in my arm and i have been having issues with a lot of nausea during the latest scans.
 
i had talked about this with the tech and he pushed the contrast in slow through my iv.
 
but as soon as they moved me into the machine, my body started to get warm all over (like normal) and i immediately started vomiting all over the place (not normal).
 
i was literally projectile vomiting all over myself and all over the machine.
 
they could not get out of their room (the techs are in a room while they give me the exam) with the green barf bag (that i lived with while in the hospital) fast enough. it was all over the place. i was literally soaked through my shirt and the top half of my pants. and my hair (which as a sidenote i think is starting to fall out because my pillows in the morning have been covered with my hair and more and more is coming out in the shower but no balding spots yet).
 
they gave me a warm blanket to cover up with and then we did a few more scans. when i am in that machine, i am not supposed to move. as soon as i started vomiting (while in the machine), clearly i moved. so we did a few more (without more contrast) in hopes they could get all of the shots they needed for the radiologist to do their review.
 
when they finished those, the nice tech asked me if wanted help removing the vomit from the back of my hair (i am laying down for the exam so the back of my head was soaked too). of course i did since i couldn't see for myself which was very nice of him.
 
i then went out to the observation room and waited while they confirmed that they got the needed scans, and then when i could, ate a little snack until i could confirm that i thought that i was not going to get sick again and they felt confident that i could leave.
 
all i really wanted to do at that point was head home and go to bed. i was already exhausted (as usual), was embarrassed (though not my fault vomiting in front of others is never fun), and did not feel good. but my work day was packed for the rest of the day so i did what fighters do and rallied and went to work (and changed my clothes of course).
 
ugh. long, long day.
 
we head in at 7 am on monday for bloodwork and i get the results of the scans at 8:15am, so send your mojo and vibes to us at that time. i then go in for infusion at 10am and have a psych appointment too at 9. busy morning to say the least.
 
thanks for all of the love and support and good thoughts.
 
anywhere i fight, you fight.
 
here we go again. xoxo