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


Monday, July 24, 2017

round 8


round 8 is done.

i was so tired today that i slept for a lot of the day. i just couldn't keep my eyes open between the treatment and the anxiety meds. i barely remember the ride home and some errands that barrett did for me while i stayed in the car.

my bloodwork was good except my potassium is low so i will go on a supplement for that and treatment went fine. we came home and i slept for a few hours.

when i woke up, i think the combo of having treatment today and it being a monday and some major things going on this week at work caused my anxiety to kick in and i would say that i had a minor panic attack (nothing compared to the severe one i had at the start of april, the meds have helped keep those at bay but i definitely have issues every day with fighting the anxiety).

the side effects continue. taking meds to help the swelling. dry mouth. fatigue. i haven't lost my hair which has been a nice surprise, hopefully i didn't just jinx myself. so far no other complications like nausea coming back or rashes or falls or other issues. my balance has been a little better the last few weeks so that has been good, no falls in the last couple of weeks.

still quiet in this space because i still haven't figured out how to carve out the time to write.

i hope that your weeks are getting off to a great start -- make it a good one.

anywhere i fight, you fight. xoxo

Monday, July 17, 2017

dear 42

dear 42,

nice to finally meet you today.

i am very thankful for your friend 41 gracefully turning me over to you. i asked 41 that as my last wish last year, and i so appreciate 41 coming through for me in the end.

so you and me. 365 days to go.

we already know what many of those days will include. treatment. scans. needles being put in my port. fears. scanxiety. anxiety. undoubtedly some tears. hopefully more caused by joy than by sadness. we know the side effects will continue, will likely get worse, and that you will probably push me to my limits in what i can take.

but i also hold out hope for you.

i think that you can be a year that brings good things too.

i am thinking about signing up for a 5k again so that i have a goal to work towards. you will have to cooperate with me and my swollen feet and exhausted body. but i think that we can do it. we won't be fast, but at least we will be doing it. that is all that matters.

i am hoping that you take me on some new adventures. i would love to see france now that we have family living there throughout the year. i would love to go to new york with barrett and walk across the brooklyn bridge. i would love to go on some new family adventures, and do some of the same ones because disneyland will only make her eyes shine so bright for so many years.

i would love it if you and i can carve out time to really start cranking out some happy mail again.

and i want us to really focus on documenting our lives, i want to get back to getting our pictures in books and maybe doing that in different ways than i have before.

i want us to read a lot of good books together, our library list is long so that should not be a problem.

i want you to protect my friends and family from cancer and illnesses, and remember that i am already taking one for my team. so leave them alone. we are all tired of you coming around, and you aren't welcome here so take the hint (finally) and pack up and head out of town.

i want to see my daughter turn 9, and spend every day watching her continue to grow into the amazing person she is.

i want to celebrate being married to my husband for 11 years, 41 was nice enough to let us ring in our 10 year anniversary so i look forward to you allowing us to add one more to our current total.

i would love for you to help us find the time to finish the projects we want to do here and for me to finish all of the decorating ideas that i have for this home.

i would love it if you make my anxiety lessen so that my days aren't so hard and i don't rely on pills to cope and make it through my days anymore.

i am thinking that you and i might get a new tattoo this year. just maybe.

i would really love it if you allowed us to take a lot of naps. long ones.

i want to be more of a tourist in our own city and state and explore near and far.

i hope that you bring a lot of hugs.

and more laughter than i can even imagine.

i hope that you keep the tumors stable, that you don't allow them to grow. i hope that you allow me to keep beating the statistics. i hope that you don't make me go through anything worse than i already have. i hope that you don't bring the words i never want to hear, "there is nothing more to try or do." i hope that you know that i have been fighting my hardest over these last 7 years.

i want to see her grow up.

i want to grow old with him.

i want to spend time with my family and friends.

so all i ask of you is 365 days of the above. and then i will leave you as you pass me on to 43.

as i told some people today, i love the fact that i am turning 42 today. that means i am one year older. and one year older means i got another year. and that is the best.

so now that it is you and me, let's get started with all that we have to do.

you be good to me, i will be good to you, and we should be just fine.

in an ideal situation, we will be better than fine, we will thrive.

thanks for the chance to get to know you, i am so glad and thankful that you showed up.

i welcome you with open arms.

let's see what we can do together 43.

i am confident it will be more good than hard.

onward we go.

it's you and me.

let's do this.

love, me




Sunday, July 16, 2017

canciversary #7

"magic happens when you do not give up, even though you want to.
the universe always falls in love with a stubborn heart."
(Jmstorm)


7 years ago today i got the call that i had cancer.

still seems like just yesterday.

it felt like the phone was going to ring at 10:30am telling me that the doctor needs to talk to me right away. i can remember the nurse's voice. i remember the tone in her voice. i remember immediately knowing something was wrong and then hearing the words and the tears starting to fall. i remember every second. i think that likely all cancer patients do.

i still remember the frantic moments of that day with such amazing clarity.

and i remember when the oncologist originally told us the statistics. and i remember knowing the reality that those statistics would not allow me to watch my one year old daughter grow up.

i am living beyond those statistics now and continue to plan on breaking those statistics and being ones of the outliers that gives the doctors and other patients the hope that someone has to be the one that does not fall into the usual numbers.

someone has to be the outlier right, why not me?

i remember how i felt last year on my canciversary - i remember writing that post and exactly how i shitty i felt last summer.

i would be lying to say that it isn't hard to be here one year later and still not feeling well and being back in treatment again. it is hard to know that the best we think we can hope for at this point is that the tumors don't grow or spread. there are a million things i could likely say about that but i am tired and emotional and i am sure that you can guess those million things i would say.

so 7 years today.

not one single day since that i have not thought of or somehow had my day shaped by cancer.

not one single day. in 7 years. that is a lot of days.

but i hope with everything i have that i am writing the canciversary post #8 on this day next year, regardless of how i feel.

i just want the chance to write the post.

that is really all i have wanted since july 16th, 2010.

the chance.

xoxo


Monday, July 10, 2017

round 7

"i don't believe in magic."
the young boy said.
the old man smiled.
'you will, when you see her'"
(atticus)


round 7 is in the books.

my bloodwork looked good and so we were a go.

for the side effects, the fatigue continues to ramp up. i think that i could sleep all day, everyday, and really have no problems sleeping.

i have gone off of the meds that help me sleep at night just to try and take one less med. some nights that works fine, other nights i have nightmares. i wish i could know which nights would bring the nightmares so that i could know which nights to take the meds.

dry mouth. dry skin. thought my hair was beginning to fall out but no big patches yet.

and one of my all time favorites, cramps. the muscle cramps that came on in the middle of the night and are in my feet and legs and are relentless.

i was thinking today as i lay in the hospital bed about how last year before i started treatment i said that was likely the best i would ever feel again. i was definitely right about that.

between the side effects from the treatment, and the issues i am having with anxiety, life feels very off from what i am used to.

but i am hoping that slowly i will start to regain some normalcy.

i went for a walk yesterday and it was the second time i have been out for a walk since i got sick this year. it felt good but it also made me realize how weak i am. so i might need to set a goal around that, maybe sign up for a 5k in december and give myself something to work towards.

goals, something i am going to be working towards as soon as i feel like i have caught my breath. you would think that now that it has been two and a half months since i was so sick i would feel like i have caught my breath a bit, but that is simply not so. but it will come, i guess i just need to continue to be patient and let my body heal and deal with the treatment and the anxiety.

so onward i go.

i hope that your week is off to a good start.

thanks for all the support.

anywhere i fight, you fight.

today we fought in bay 23 and every minute afterwards.

xoxo




Tuesday, June 27, 2017

6


round 6 is in the books.

my bloodwork looked good.

we will do a few more rounds and then do scans again to see what the tumors are up to. hopefully shrinking, at a minimum not growing.

here is what i know:

+++ the fatigue continues to get worse. i am so tired. all of the time.
+++ i could not make it through the day without anxiety meds. that is for sure. mornings are still my hardest time followed by early afternoons. i am trying to kick the meds that are meant to help me sleep but have been having nightmares on and off throughout the last couple of nights so not sure which way to go on that.
+++ seeing a counselor and a psychiatrist continue to help.
+++ side effects continue to be fatigue, dry mouth, dry skin, i thought my hair might be starting to fall out but so far no large patches. a couple of times i have lost my balance but had soft landings both times.
+++ i fall asleep at a moment's notice if given the chance, like when the passenger in a car. night night. zzzzzzzzzzzzzz.
+++ i really miss writing in this space. i just can't figure out quite yet how to get the time in to do it since i go to bed so much earlier now than i used to which doesn't leave me as much time to jump on the computer. i am still trying to figure out how to do that. stay tuned. you will know if i have figured something out if you see more posts coming up.
+++ thanks for all of the love and prayers, i continue to really appreciate them.

i hope your weeks are going well, we are already to hump day. i for one think that pretty much rocks.

anywhere i fight, you fight. xo

Monday, June 12, 2017

round 5

this is going to be short and quick because i am tired and the laptop is about to die and i am too tired to go back downstairs to get the charger.

round 5 went well today. bloodwork all looked good.

i was so tired all day i could not keep my eyes open, and unlike most treatment days, i did not work on my laptop for some of the time.

i slept. i just could not keep my eyes open.

thanks for all of the love, mojo and prayers you are sending my way.

anywhere i fight, you fight.

another round in the books. xoxo


Sunday, June 11, 2017

shore walk 2017 is in the books


shore walk 2017 is in the books.

here is our awesome team "cancer you can suck it" from this year.

this was our 7th year doing the walk and we raised over $5000 for fred hutchinson cancer research. our team raised the most money for the walk and actually raised 7 times more than the second place team. go team!! that is pretty damn awesome if you ask me.

speaking of pretty awesome, my friend marcie ran her first 5k today and she has been training for quite a while (even in the rain which we have had a lot of ). i am so proud of her - go marcie-roo!!!! keep running, and i hope that i can do one with you soon.

so it was a good morning, the sky was blue, and gave me some time to catch up with friends and family while we walked the 3 miles.

thank you to everyone who was on the team, donated to our team, and sent our team good mojo for the day. i really appreciate it. i am so thankful for the money we were able to raise and know it will help cancer patients in the future.

on saturday, barrett and i attended the annual melanoma symposium that scca puts on every year for melanoma patients. it is a mix of emotions to attend that as some of it hits so close to home it feels like reality hitting us right in the face. but it is good to hear about the latest research and the advances they continue to make in melanoma research - maybe i will be one of the patients that benefits from that research and more than a statistic.

they always have patients who share their stories at the end and those bring out the kleenex during that time. you know i love people's stories and i think that they are so important, and then you tie them to melanoma, and i am total waterworks.

here are a couple of key things to remember about melanoma and protecting yourself and the kids in your life:
-- pediatric melanoma is on the raise 3% each year in the last 3 years.
-- 500 kids a year 18 and under are diagnosed with melanoma each year
-- every hour of every day someone in the united states dies from melanoma
-- melanoma is one of the fastest growing cancers in the US and worldwide
-- most melanoma is curable in the early stages with an over 90% curable rate
-- most cases of melanoma are caused by exposure to UV light and sunlight
-- tanning beds are classified in the same cancer risk as tobacco, arsenic, and asbestos
-- melanoma can develop almost anywhere, including the skin, eyes, digestive tract, genitals, under nails, or even in the mouth
-- carefully examine your skin every month. look for spots that seem unusual or are changing
-- melanoma can spread to the brain, liver, and lungs making it very difficult to treat

so please continue to remember to protect the skin you are in.

the side effects from treatment continue. fatigue. i am really tired and fall asleep at a moment's notice when i can. some of that is my anxiety meds too i am sure. dry mouth. swelling of my legs. the list goes on.

the anxiety continues to be really hard for me and thank goodness for the meds that i am on. mornings continue to be the tougher part, i am in tears most mornings before i even leave the house. i could not make it through the work day without my meds in the afternoon. i have another appointment with my psychiatrist on friday to check in and see where i am. i have an appointment with my counselor tomorrow which will be good as well. as i always say, it takes a village.

one thing that i have realized (or maybe just because i am now having such a problem with anxiety) is that it doesn't seem like it is talked about enough. since i have started talking about it, people have told me their stories or told me that they deal with it too and i had no idea. i think that there needs to be a larger conversation around it, or maybe figure out why it doesn't get talked about more. i will definitely talk about it here because it needs a voice for me and i am really struggling with it. i have been honest about everything that goes on medically with you before, so why not be honest about the anxiety too since it seems to be ruling my daily life at this point. it makes it really hard to get out of bed and face the day each day, i hope that changes soon.

i had a mammogram last week and the initial pictures showed that i needed to come back in for further testing. so i made an appointment for about two weeks out. before i had even got back to my office (which is literally 5 minutes from the doctor's office), their office called and said the doctor wants to see you on tuesday at 3:30. when they call back immediately, and the doc moves up your appointment to two days instead of two weeks, you don't have the best feeling. after going through multiple more tests and ultrasounds, she believes the masses she can see (and i can see which are obvious on the scan) are not cancer. but i will be back in six months to have another mammogram. there was part of me that was scared shitless about them telling me i had another cancer, and there was another part of me that felt like if i needed to kick the shit out of another cancer i could do it. i again would have no other choice.

tomorrow is treatment #5 and it is early. we check in at 7am for bloodwork and then meet with the doc, and if all goes according to plan, start treatment around 10am. we will see what the morning holds.

my friend mary goes in for scans tomorrow to see how her treatment is working, results on wednesday. please send your mojo, prayers and love to wisconsin for her.

another week starts, and i feel about a million different emotions about it. but it will come regardless so here we go.

anywhere i fight, you fight. xoxo


Tuesday, May 30, 2017

round 4 is in the books


round 4 is done.

my bloodwork was good so we were a go today.

a couple more side effects over the last week and we aren't sure if they are due to the anxiety meds or the treatment.

i am more  a lot more tired that i have been recently. there are times when i can't keep my eyes open and i am out like a light. that happened on a few car rides  (when i was a passenger, don't worry) over this weekend.

i have lost my balance when getting up a couple of times, and luckily the one time i would have totally fell down i was able to fall onto malena's bed. i still typically use the cane in the morning because that is when my balance is at its worst.

the anxiety continues on and i am super thankful for the meds because i would not want to go through another severe panic attack like i had. before the meds kick in and i can feel the anxiety coming on in the morning it is not a good feeling because i am afraid i will lose my ability to hold in the panic. so it is still rough each day but i am doing the best that i can to cope. the meds help, there is no denying that. i wouldn't be getting up each and making it through the day without them.

the tiredness causes me to be behind on life. on work. on friendships. on life in general. but i just try to focus on doing what is needed for the day ahead because at this point that feels like all i can do. that is not to be a pity story, just a reality of how things are these days.

one day at a time.

one treatment at a time.

we will do scans again in about 2 months. will aim to get 4 more treatments in before we do scans again.

thanks for all the good mojo, love, and prayers you are sending me to get through treatments and everything else that life seems to be sending my way these days.

anywhere i fight, you fight.

the fight continues on. xo

Sunday, May 21, 2017

next steps with anxiety + 2017 shore walk for cancer research

i met with the psychiatrist this friday to talk about how things are going with the anxiety.

i told him the truth. i am still really struggling and some days are better than others.

the mornings tend to be the hardest. it ranges from feeling very anxious to crying and feeling like i can't make it through the day. it depends on the day.

the evenings at home with barrett and malena are the easiest.

until bedtime. then i get anxious about the following morning but i have meds to help me sleep through the night.

i thought that i could go off of those sleep meds as i have been so exhausted that i thought that i could sleep without them. i tried last night and woke up in a panic with nightmares about work. so i am not going to try that again tonight. maybe again sometime in the future.

we are doubling some doses of some drugs, and trying to work me off of one of the three drugs.

we will see how that goes.

between the side effects of the treatment and the anxiety i definitely feel like i am all over the place and my mind is racing in about one million different directions at the same time. and the anxiety makes it really hard to know which of those directions i should move it.

but i am trying hard to make it through this and just take it day by day. that is all i can do.

at the end of our session, my psychiatrist let me know he is leaving scca at the end of july so i will need to meet with a new one after he leaves. even though i have only had two sessions with him, i was bummed. that means starting all over again. on the bright side, i will have a few more sessions before he goes and i am going to start trying to do regular sessions with my counselor on treatment days. as i have said bef0re, it takes a village and the village continues to grow.

it is not easy to write and share about the anxiety and how crippling it has become for me. but it isn't easy to write about cancer either. so i figure if i share what it is like to battle anxiety and it helps someone who is also dealing with it feel less alone or helps someone to understand it better, then mission accomplished.

it is almost time for the 2017 shore walk that we annually participate in that raises funds for fred hutchinson cancer research. at the end of may, my sister-in-law's family held a bunco fundraiser and $2700 was raised in 3 hours. how incredible is that? i know, pretty damn awesome. the shore walk is on june 11th and if you would like to walk/run or donate to our team or just send us good mojo you can find more info on our team page. if you sign up, make sure that you sign up for our team "cancer you can suck it" - great name, right? right.

my friend mary had her next treatment on friday and all went well until she started feel awful towards evening time. but she felt better on saturday, and because she kicks ass, she ran a 5k today and had my name on her bib. she is a fighter. no doubt about that. go mary go!

i probably won't write more on here this week as i am headed for a super busy week as i had out of town on wednesday to celebrate a family member's 21st birthday for a couple of days. my goal is to leave work behind and just take three days to be with family, breathe, take my meds and try to be calm. i have a million things to do between now and then so wednesday feels a long ways away but it will be here before i know it. which i can't think about too much until i take my bedtime meds.

i hope that you all have a good week. make the most of it. enjoy it. do something really fun. xoxo




Monday, May 15, 2017

results

good news.


the spots on my lungs that the doctor was concerned about are almost all gone.


woohoo!


and my bloodwork was good so we are a go for the infusion.


i am in my infusion room now and just about to get the meds hooked up to my port.


so i will sign off for now.


thanks for all the good luck and vibes.


anywhere i fight, you fight. xoxo

Saturday, May 13, 2017

the shit and the joy

+++ the side effects from the treatment have kicked in and the fatigue is in full effect as are some of the other side effects, dry mouth - dry skin, etc. but, the fatigue. oh man, i am tired. (the shit)

+++ my taste buds are not back to normal but green tea tastes good again and i am loving that. (the joy).

+++ starbucks now has a gluten free breakfast sandwich that is really, really good. i am also loving that. green tea and the sandwich make me pretty happy, i can't deny that. (the joy).

+++ the anxiety over the last couple of weeks has been really hard for me. i am taking multiple meds to help me get through the day, and one to help me sleep at the night. and i need them. the anxiety is running high, and how i do depends on the day. i woke up in a panic attack last sunday morning and did not have a good day. some mornings i wake up and think that i can make it through the day ok. other mornings i wake up and am paralyzed by the anxiety. i see the psychiatrist again on friday so we will see where we go from there. i think that the anxiety has definitely added to the fatigue, and the anxiety meds create their own side effects (memory issues, pending on dosages i can't drive because some are like narcotics, etc.). but i could not make it through the day without them so for now it is what it is. (the shit).

+++ jennifer has met with her team of doctors and they are working on coming up with a plan on next steps for her. the fact that she has a good team of doctors working collectively on a plan for her (the joy/hope). the fact that she has to deal with cancer again (the shit. obviously). thanks again to all who signed up for the happy mail campaign for her. you are awesome. but we already knew that didn't we? yes, we did.

+++ mary has had two treatments and the second one had side effects where she felt like she had the flu and was down for the count for the day (the shit). she is doing better and will do her next treatment this coming friday on the 19th so start kicking up the mojo her way please. she is going to run in a 5k on the 21st. go mary go for kicking some running ass while going through treatment (the joy).

+++ i only need to use the cane in the morning when i am pretty wobbly (the joy). sometimes during the day i lose my balance but it just happens for a moment. i do not miss walking with the cane, but i do miss feeling like i have my grandpa physically close to me.

+++ i had a scan on thursday (the shit). my last scans showed an area that looked like an infection in my lung. my oncologist wants to make sure that it is what it was. if it was an infection, it will hopefully be gone in the scans. we get results on monday at 2:30. so starting kicking up the vibes and mojo.

+++ monday is a treatment day if my bloodwork cooperates. the shit because i am doing cancer treatment. the joy because there are drugs for me to do cancer treatment and hopefully continue to keep those tumors from spreading/growing.

+++ i have been quiet in this space primarily because of the fatigue. i am going to bed pretty much as soon as malena does. and i am trying to make it through working full time and a lot of stress going on for me related to work, and still feeling like i am catching up on our personal lives. hopefully things even out and i get back to this space more again soon (the hopeful joy).

+++ sunday is mom's day (the joy). tonight i will be doing a camp out with my girl who is already lights out. today i got to celebrate with my awesome mom-in-law and dad-in-law and bro-in-law (great joy). tomorrow i get to celebrate again with my mom, dad, brother/sis-in-law, and i get to see my grandma and other family members. and of course, i get to celebrate with malena and barrett. i am super thankful for this day and another year of celebrating getting to be this 8 year old's (how is that possible?) mom. being her mom has been the greatest thing i have ever done and it challenges me everyday in all of the best ways and keeps me learning everyday on how best to help her grow and face the world. i am so, so lucky to get to spend my days with her and i don't take that for granted for a second (the joy).

+++ i know that mom's day is not happy for all women. some are missing their moms who are not physically with them any longer. some don't have great relationships with their moms. some wish with everything they had that they were a mom. some mourn kids they have lost. some don't have great relationships with their kids. so my heart goes out to all of those whose hearts ache on this day and for whom mother's day is a hard day to get through. (the shit)

+++ i hope that whatever this sunday brings for you, you find some time to enjoy some part of the day in whatever way makes you happy (the joy).

+++ more to come on monday. thanks for all the vibes and love.

+++ anywhere i fight, you fight. and the fight continues on. xo





Monday, May 1, 2017

the end of the day

this will be short because i am super tired. which is not unusual these days, but these last couple of days i can barely keep my eyes open.

all of my bloodwork looked good so the infusion was a go.

no problems and everything went as usual and we were there for about 6 hours total between bloodwork, doctor appointment, and infusion.

thanks for all of the love, prayers and mojo you sent my way today, i really appreciate it.

it was a long day due to infusion and anxiety creeping in throughout the day.

i appreciate all of the good thoughts.

hope your week is off to a good start.

xoxo

Sunday, April 30, 2017

round 2

in the morning i go in for round 2 of this treatment plan.

another early day.

bloodwork.

doctor appointment.

infusion.

we are still trying to figure out my anxiety meds and get to the right combo. we tried changing up a few things this week with input from the psychiatrist that we met with last week. but it didn't seem to work as many mornings i woke up straight into a panic attack. not the severe panic attacks i had two weekends ago that lasted for hours (the psychiatrist did confirm that those were in fact severe panic attacks so at least we got confirmation that was what i was going through for those two days before we got some meds).

but it has been hard and different finding my way through the anxiety while trying to maintain normalcy at work and in life. it is hard. really hard. every day. but i am trying the best i can.

i would also like to find a combo that works because i can't drive myself because two of the meds essentially put you under the influence. so clearly i wouldn't want to risk safety for myself or for anyone else. but not being able to drive myself anywhere is a real pain in the ass but i guess that is the least of my worries at this point.

i think that my body is still in full recovery mode as i pretty much slept all day yesterday, which if you know me, is rare. i would usually be trying to knock things off my "to do" list and get things done, but i had less then zero energy so i just listened to my body. zzzzzzzzzzzzzz was about all it was saying throughout the day.

i will let you know how treatment goes tomorrow, hopefully all my blood levels look good and i get to have treatment. fingers crossed.

anywhere i fight, you fight. xo

sidenotes:

1) ckelleher - i saw your note about signing up for jennifer's happy mail, just let me know how to get in touch with you to give you the details.

2) if you signed up for jennifer's happy mail campaign (and it isn't too late), you should have heard from me with the details. if you haven't, let me know - i want to make sure that i didn't miss anyone. thanks!




Monday, April 24, 2017

for jennifer + my buddies in wisconsin

"you can do this"
(self - print by life love paper



tomorrow jennifer has a 7am check in for surgery.

so tomorrow (tuesday) is definitely a day that i need you to pull out all the stops on your love, mojo and prayers like you normally do.

so let's hope that the surgery goes well, they find that the cancer has not been on the move, and they only have to take what they absolutely have to take around her organs.

that is what we hope for.

thank you to all who have signed up for the happy mail campaign for jennifer. if you would still like to participate (you can sign up anytime), you can check out all the details here.  we are going to make some happy mail magic happen for this girl, that is for sure.

i will write more later this week about the latest with me, psych appointments, crazy balance problems, the anxiety (oh, the anxiety), swelling, lack of memory, not being able to drive myself due to meds for what feels like the 4th month in a row, etc.

but all that is going on with me pales in comparison to what we really need to focus on tomorrow.

and that is jennifer.

thanks in advance for all the love you will send to her and her awesome (one of my most favorite people in this whole entire universe) husband michael and their families.

anywhere cancer fighters fight,

you fight.

tomorrow is an early morning start on the jennifer's latest fight.

xo

important request: i would also appreciate you sending you love and prayers to my friends the pattersons in wisconsin who had two traumatic losses in the last three days. one a beloved aunt to cancer and another a beloved cat to cancer. they could most certainly use love too. thanks for sending it their way, i know they appreciate it. xoxo



Tuesday, April 18, 2017

happy mail campaign for jennifer

"i chose to make sadness my softness,
uncertainty my openness,
my weak days my tend-to-me days,
my brokenness my beautifulness and my scars my strength"
(s.c. lourie)

i got news two weeks ago that my friend jennifer got the news that her cancer is back.

dammit.

and that is not using x-rated words on the blog. because you know that i really want to way f*&k cancer. in capital letters. a million times over. it just never, ever stops.

i wrote a lot about jennifer on the blog previously when she was going through her fights and we did a happy mail campaign that you can read about here.

well, it is time to start another happy mail campaign. jennifer has surgery at the university of washington (same place i have had my surgeries) on the 25th so she will be in the best hands.

if you have been reading this blog long enough you know what a happy mail campaign is but just in case you haven't, let me explain it.

the goal is for jennifer (and if you would like to send mail to her awesome husband/caregiver mikei  know that he would appreciate it as well) is to get one piece of happy mail (a card that just cheers her on while she recovers, a card to make her laugh and/or letting her know that good vibes are being sent her way) every week while she is recovering and making her way through whatever comes next.

if you would like to participate in the happy mail campaign, all you need to do is let me know that you want to be part of it and make sure that i know how to contact you. i will assign you a week and you send the mail and it is as simple and lovely as that.

i know first hand how nice it is to open your mailbox and see kindness and not the bills overwhelming your box. names you know. names you don't know it. just love. it is basically the best.m
i hope you will join me in bringing some cheer to the jennifer and mike.

please let me know by friday and i will get things organized over the weekend to assign the weeks.

thanks all, you are the best.

wherever jennifer and mike fight, we fight.

because we love fighters, and they are two of the strongest i am lucky enough to know.

sending much love to you jennifer and mike. all the goodness, mojo, and prayers are coming your way.

and soon some happy mail too.

love you guys.

xoxo




Monday, April 17, 2017

scan results

i am writing this from an infusion bed so it is going to be short because i am emotional and i don't know what to say about how i am feeling as it is a mix of anger/sadness/disappointment/thankfulness, etc.


but here is what we know.


the tumors have not shrunk.


they have not grown, and there are no new ones, which i am so thankful for.


but i wanted the last three months of hell to shrink those tumors, so the fact that they didn't is super devastating to me.


i am getting an infusion today of just the one drug (the one i was on before we started the two drug combo).


i will be on this drug indefinitely. infusions every two weeks from here on out.


if at some point we think that things are stable enough to talk to the lung surgeon about doing another lung surgery to remove the tumors, we will cross that bridge when we get there.


so for now the best that we can hope for is that the tumors remain stable.  and that i can handle this treatment again.


it feels like such a long day for us and it is only 10:22.


anywhere i fight, you fight.


thanks for hanging in with me.


xoxo

Friday, April 14, 2017

scan day


scan day.

as i write this, we are driving over to seattle cancer care alliance to do scans.

we will get the results on monday. waiting on results over a holiday weekend, at least i will have some distractions and time with friends and family.

all scans are rough. this one seems more difficult than usual. i woke up, immediately starting crying and felt like i was going right into a panic attack so we got meds in right away so that they could start kicking in.

i am especially anxious since we did not get the 4th dose in, i really wanted that 4th dose. you know me and goals. i meet them. so I have to let go of that and hope that the three doses shrunk the tumors.

i am not going to sugar coat this for you guys, i never have.

i am scared shitless about these results on monday. i always am, but there is something about these ones – maybe because I got so sick and i didn’t get the 4th dose in and i am petrified that this treatment didn’t work. pending results on monday, we may do an infusion of the one drug again at a lower dose and we will do that indefinitely for every two weeks. i can’t really think about that right now at all because the anxiety won’t let me go there and I can’t or i will want to crawl up in a ball again. i need to get myself together for this and make it through the day. one day at a time, that is what we are focusing on.

this entire week have been focusing on just what i need to do to make it through the day. that is all. the meds affect my memory so much that barrett has to sort out my meds each morning and put them in a pill container with the time that I am supposed to take them because I can’t remember on my own.

i can’t drive because the meds make me feel a bit like i am under the influence (don’t even get me started on how bad I want a cold cider). so that is hard on me because i feel like my independence has been taken away from me. i can only go somewhere when someone way can take me, that is hard for me.

it has been a long week trying to get my legs under me with this new complication of work and life and anxiety, but i am trying. i am trying really hard, and it is really hard for me to not be 100% on my game. so i am trying to deal with that too. it is overall just a lot.

i thank you for all of the love, and prayers and vibes. i find myself in myself in unchartered territory over the last couple of months, and especially now with the anxiety and panic attacks.

but it is all part of the fight right, right? and we can never know what to expect.

i hope that you all have a great weekend, whether you celebrate with easter festivities (important tip: jolly rancher jelly beans are the best jelly beans trust. was I wrong about the cadbury mini eggs? i think not.) or you don’t. however you choose to enjoy your weekend i hope that it is a good one. ours is going to include eggs hunts with family and friends and family traditions i have known since i was a kid. there will be comfort in that for me.

enjoy your time. make the most of it. if you have a cold one (like a cider), have one for me and cheers to good results on monday.

thank for all the ways you show have shown love to us and the ways thatiI am reminded daily that I have a village fighting with me.

i couldn’t ask for a better support group.

much, much love,

anywhere I fight, you fight.

today the fight is on.

xoxo

Monday, April 10, 2017

monday results

"for a seed to achieve its greatest expression, it must come completely undone. the shell cracks. its insides come out and everything changes. to someone who doesn't understand growth, it would look like complete destruction."
(cynthia occelli)


today was a long/good/tiring day.

first up was bloodwork through my port.

then we met with the nurses and the doctor.

i had a surprise for them and my scheduler -- thank you cards and packages of cadbury mini-eggs, and they were the hit of the day for them. so fun to see them excited to be appreciated for all of the work that they do. i could not have made it through the last two months and the grueling day in and day out of february and march made me appreciate them even more than i already did with the endless calls, change in meds, getting my appointments booked, making me comfortable when i was so sick i could not move, etc. they rock and i wanted to make sure that they knew what. it was so fun to see them to so excited --- and how unanimously we all love cadbury mini-eggs. if you don't, you should. for reals. trust me. they are basically the best thing that has ever happened to candy. and they only come out at the easter time (which is why i save a few bags to get me through the spring time;)).

my bloodwork looked good. so guess what. as of today, i am off of the steroids. woohoo! so happy about that. if i was not so tired, i would be over the moon - so i am like halfway over the moon with excitement because my energy level can't get me quite over the moon. i think i need some type of catapult;)

i am still on the anxiety meds and probably will be for a while. the anxiety is still definitely there and i don't see not needing help for a while.

i had an appointment with a social worker next who i had never met before and she is the new counselor for the melanoma clinic and i really liked her. i think that i will get appointments set up with her to have someone to talk to besides the psych specifically about the anxiety meds.

so all in all, good day. off the roids which was the main thing. that should help my overall demeanor. lucky barrett.

i am having a lot of issues with my stability when i walk so i am definitely relying on my cane to get me around. that might be the anxiety meds, might get better when the steroids get out of my system.

so friday i go in early for bloodwork and then scans. results are on monday.

we are not going to do the 4th dose of the treatment because of all the issues that i had with the third. so the best that we can hope for is that the three treatments shrunk the tumors. pending my results on monday, i may do an infusion with just one drug. we will see, it will all depend on the scan results. doesn't everything always depend on the scan results? it sure as hell feels like it.

well i am really tired so i am going to head to bed.

thanks for all the mojo, love and prayers as we head into scans --- we need all the goodness we can get. i can only hope that if the three treatments kicked my ass the last two months they shrunk the tumors.

anywhere i fight, you fight.

today was a long day. but we got some progress. so we will take it.

now we need shrinking tumors on monday.

let's make it happen.

xoxo













Saturday, April 8, 2017

the last two weeks and anxiety

"if you can't fly,
then run,
if you can't run,
then walk,
if you can't walk,
then crawl,
but whatever you do
you have to keep moving forward."
(martin luther king jr.)

t is 6am on saturday and i can't sleep any longer so i decided to write. i have missed writing in this space, i hope to get back it to it on a more regular basis moving forward. so i am going to give you an honest (i am always honest but this one is a little harder to write) update on on how things have been he last two weeks.

last time i wrote the tube had just come out (still so thankful for that and my nose and throat are still recovering pretty good).

a lot (that is putting it mildly) has happened since that last post.

after the tube came out, i think that the weight of the last two months of being sick really caught up with me. the emotions of what i had been through. all of it. on top of that, i was regaining entry into work and trying to figure out how to catch up, but work life was continuing to move as well on in real time. so i felt like i was in this very hard place of trying to piece two months of my life back together while life continued to race on for me - both personal life wise and professional life wise. if you know me well, you know that i have very high standards of myself to be on my game and in both personal and professional life (some of you reading this right are now are probably laughing outloud to yourselves because you know just how true that is. right? right.)

something interesting (probably not surprising) happened after tuesday. everything emotionally and physically combined at once for me and i started to have severe panic attacks which i have never had before. i was not even sure what was happening at first but i felt like i was 100% losing it.

i was getting no sleep at all (i mean like no sleep which at that point was weeks of no sleep due to the nausea and hospital and feeding tube, etc.), sweating so bad at night that my pjs were soaked through, and i was in an absolute panic and could not lay still. the cumulation of it all came on friday night. i had the worst panic attack yet at about 1am and work barrett up. here is what i was convinced of during that specific panic attack - and i will tell you that with 110% certainty i was convinced that this is what was going to happen and you could not talk me out of it no matter how you tried

for me, a panic attack looked like me curled up in a ball rocking back and forth and not being able to stop, extreme breathing that i could not get under control, pulling on my hair, and in constant rolling motion and not able to sit still and repeating time and time again what i knew was going to happen. and you could not convince me that anything other than what i thought was going to happen was the reality for us. it was very, very scary and i at one point though that barrett needed to just check me into some place that could help me. but we tried to remember that it was likely everything i had been through catching up with me, and all of the meds of the last two months plus, complete lack of sleep for i don't know how long, and trying to resurface into life both personally and professionally.

the anxiety convinced me the following was going to happen. the projects that i was working on were going to fail because i had been out and would not catch up. that would result in me having to quit or i was pretty convinced they would fire me. barrett was no longer going to want to be married to me because i was a failure and he would leave me. because i would lose my job, we would lose the house. we would have to move and i would also be a disappointment to malena and disrupt her life and she would never forgive me.

but at 1am on friday night, though it sounds dramatic (but this was the reality), with everything that i had, i believed that was what was going to happen. i was rocking in a small ball and barrett (bless his heart) was just trying to get me to breathe which i could not do. we were up all night long until the sun came up and then i tried to get it together by the time malena woke up to be a little bit normal. that didn't work so well as i had panic attacks throughout the day but out of sight for her so that she didn't know.

barrett and i came up with a plan to focus on getting the house in order, it was still chaos from the hospital with bags everywhere from the hospital, throw up bags (not with throw up in them of course but in case i got nausea --- just to clarify;) scattered throughout the house, etc. things in our bedroom left over from the tube feeding. i wanted all reminders of being sick out of my eyesight. barrett's mom graciously came over to help us with "operation get house cleaned up from hospital visit and the nausea run over the last two months" and we knocked it out. in between all of that, i had more sever panic attacks and we finally called seattle cancer care, got the nurses, got me some meds to get calm to override the panic and a pill to help me sleep because it has been weeks that the nausea had built throughout the night while i was wide awake and put me into full anxieity tilt during nighttime which was not helpful at all as you can imagine.

the meds have helped. i have not had a full blown panic attack since sunday. i am taking it day by day. i have to say that i could have not have done with this without my family, they are the best and have helped me each day through getting ready, checking on me in the mornings and throughout the day, helping at home, etc.

barrett. what can i say about that guy? a lot. he has been through hell and back with me the last two months (and the last 7 years). he has to write down each day what time i take my meds because one of the side effects is memory and confusion so he has been great in helping me stay on track with life - while managing all of the things he has in his own life with work and everything else. i am so damn lucky to have him - i hit the jackpot the day that we went on that first date and he decided that he was going to keep me around (of course, i kind of felt the same way about him). how damn lucky i am to have him as my caregiver, better half, and team member through all this.

so where i am now? i am on the anxiety meds to keep me calm so that i do not go into panic attacks. they are working but i have to stay on a schedule or the panic sets in quickly and i can feel the attack coming on (cue barrett helping me stay on my schedule). i have appointments on monday to get bloodwork done, see my nurse, see a social worker. i will be seeing a physiatrist at some point later this month. i expect that this will be a long road but i will get there.

my mood is calm thanks to the meds, if you were around me, you would probably  notice a difference in me. my mood is calm and i probably seem a little distant. the meds have side effects like having problems remembering some things, my balance is a little off so i am back on the cane again for a while, i sometimes have a hard time tracking conversations, but i am working at it and just need help and have been honest in saying "can you say that again? can you clarify that for me?". i have also been honest with people (not about all the details about the panic attacks) but about being on meds and needing some help sometimes and maybe needing to ask questions a second time or have them clarify what they are saying. if isn't easy being honest like that, but people know bigger picture what i have been through and have been so nice to me. i am lucky to work to be surrounded by caring people and i never take that for granted.

my scans on are on the 14th, results are on the 17th. that will tell us the status of the tumors and so now scanxiety begins again. i would really love to get that fourth dose of treatment in so we will see what happens with that and if i can get off the prednisone and get it done. you know me, when i have a goal, i want to see it through. and that 4th dose is my goal - as long as it doesn't put me back in the hospital or create the nausea issues that were so severe.

speaking of goals, my awesome friend marcie (now i call marcie-roo and will probably reer to as marcie-roo from now on in this blog) has decided to start do a couch to 5k training program. how awesome is that? yes, very awesome - i am so damn proud of her (in general for all she does but for this too). her goal is to run the 5k in our shore walk/fun fundraiser for cancer research this year in june (thank you all who have signed up already or donated - i have a post coming about that soon too - our team is rocking the donations this year which i am so thankful/inspired about). i told marcie that in my recovery state sometime between now and june i will run with her, it might just be a block), but i will do it. goals, i have to have them - excited to cheer her on and it gives me a little physical internal goal to look forward to.

so this has become a long post. it is an honest one and hard to write and put all of this out there about what has happened the last two weeks and how i ended up in a spot i could have never predicted. i expect my issues with anxiety will continue for a while (maybe indefinitely how knows) and i am ready to face what comes to make me able to cope more and be a strong mom/wife/daughter/friend/co-worker, etc. moving forward. i haven't felt strong this last week for sure and that has has mentally been so hard/scary for me.

thank you for all of the love and support you continue to send my way. the messages. the happy mail. i wish that i could send you all a thank you in real time. but please know that i get them. i read them. i cherish them. they mean the world to me. they make me feel so supported in this fight. but know that silence on my end doesn't mean that they aren't resonating with me. they are, i just haven't been able to get my legs under me with everything else life brings to connect back with you all. if you know me, you know i have this vision of making handmade cards (one of my most favorite things to do in this world) for all of you to say thank you - i am thinking of different ways that i can say thank you as making individual cards may make all my crafty dreams come true but could take the rest of my lifetime to implement;) thank you. thank you. thank you for all you do for me.

i am not writing this post this morning to make you feel sorry for me or to make you feel like you need to something for me. neither is true. i write this post to be brave and be honest about what this journey is. i started this blog to give you insight into what it means to go through cancer. some days are better than others. some days leave me wondering how in the hell i am going to make it through this. these last two weeks have been a new kind of test that i am trying to find my way through. but i felt like writing this and being honest gives you an idea of what is really going on, and some of what can happen when cancer takes you on parts of a journey that you don't expect, you don't want, and you are left to pick up all the pieces and figure out how to make a complete puzzle again of your life.

thank you as always for coming along on this journey with me. i appreciate it more than i can express in words.

anywhere i fight, you fight. and trust me, as always, we have a hell of a lot of fighting left to do.

but i am in, so i hope that you are still too.

enjoy your weekends -- please, please, if you can - do something fun, whatever that may be for you. grab a magazine or book you have wanted to read for a while. go for walk (even if it is in the rain - jump in a puddle like you did as a kid), take pictures, take a nap, treat yourself to some shopping, get some ice cream (steve hanson, i am thinking of you with that one;)), give hugs, call someone you love, do something that brings you joy.

life passes so quickly by and it is so important to remember to do the things that bring you joy. they are what you will remember, they are what others will remember about you. they are what would make me so happy for you to do as i recover and i am not able to do all of things that i would like to do.

happy weekend. much love. more to come soon from me.

thanks for reading and sticking it out with me.

you all are the best.

xoxoxoxo