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