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







Monday, March 27, 2017

it's out

today has been a long day.

we had a series of appointments this morning.

bloodwork.

medication reviews.

doctor appointment.

nutritionist consult.

and then, the tube removal.

for the bloodwork, everything that we got back today was looking good. we will get my pancreas results back tomorrow, but are hoping that they are trending the right way since everything else is. fingers crossed on that one.

i get to drop some of the numerous medications that i am taking. we are decreasing the steroids a bit and hope to continue to taper those as the next couple of weeks go by. i will do bloodwork again for the next two weeks to make sure that things are trending in the right direction. pending how everything goes, i will have another round of scans on april 14th to see what is going on with the tumors.

although i have continued to lose weight which is not what is ideally supposed to be happening at this point, the decision was made to pull the tube as we had hoped for. the actual experience of it coming out was not pleasant, and i will spare you the details of what it felt like. but it is out, that is all that really matters. my nose is a mess inside and out, from the tape that has been on there for weeks (which took some of my skin with it when they took the tape off) to the inside which bled when the tube came out.

the goal now will be recovery. trying to eat and gain back weight so that no one feels the need for me to supplement with the tube again. trying to gain my strength back. trying to get sleep again. hoping my mind clears up a bit as the steroids are doing a mental game with me this time. i can't remember things. i can't track conversations at times. i get things confused. all of which is very frustrating to me, in addition to feeling frustrated in general due to the steroids and the anger tendencies they bring.

overall the goal is trying to just heal up in general all the way around.

it was around the first week of february that i really started to have issues and not feel well. it has now been about 7 weeks, and to be honest, much of the last 7 weeks is a blur to me as i was so sick the entire time. it is a very odd feeling to feel like you kind of lost 7 weeks of your life. in some ways it feels overwhelming to start putting life back together again and figuring out exactly where to start after so much time has gone by and there is catch up to do on personal life and work.

thank you for all of the support over the last two months. i really appreciate all of the love, prayers, and mojo that have been sent my way through all different kinds of ways. i have felt every aspect of it and it definitely reminded me that i am never alone in this fight.

also, thank you for all the vibes for beth and mary last week. beth got the best results possible and there is no new growth and she is going to go to scans in 6 months. yes!! mary's injection went as well as possible and she will go in for round 2 in april. go mary go!

please also continue to send all your good stuff to my sister-in-law kim as she continues to heal up from her surgeries and deal with the pain that comes along with recovery.

i will probably be a little bit quiet in this space for the rest of the week as i am pretty tired and exhausted, and am going to be putting my energy into recovery and starting to get my life back.

thanks for everything.

anywhere i fight, you fight.

the last 7 weeks have been one hell of a fight.

thanks for sticking it out with me.

xoxo






Friday, March 24, 2017

friday + good thoughts for beth and mary

it is 5am friday and i have been awake pretty much all night.

i could not get back to sleep after the 1:30am tube clearing. then the alarm went off two more times throughout the night just because we needed a little bit more activity in the middle of the night.

this has been a long week. problems with feedings at night. pretty much total lack of any sleep. a lot of swelling in both of my legs and my face from the steroids. very sore throat and problems swallowing from the tube. on and on.

the latest is that tonight will be the last feeding as we try to taper me back down to stomach eating only ahead of the tube being pulled on monday. so i have one more night of the feeding and then additional calories to take in on my own saturday/sunday so that my system gets ready to do it all on its own starting on monday.

as you can likely imagine, i am beyond ready for the tube to be pulled on monday. although i have to say, actually having it pulled will not be fun for me. at all. i will be glad when it is over, but i am not looking forward to the actual process itself to be honest. but hopefully it will be quick and there will be no complications.

i am looking forward to two days of not having to be in the office and just being able to be more comfortable and around family.

i would also like to ask that you kick up the vibes, prayers, and for beth and mary today.

today mary starts her injection treatments for the melanoma tumors in her leg in wisconsin. i already got an update from her this morning that she got a good nights sleep and is ready to kick some melanoma ass today. i love that spirit she has, she is a fighter, that is for sure.

today beth gets her scan results regarding the spots on her lungs so that we know what lays ahead for her. this is a big day and one that i know has made her (and all of us that love her) anxious for quite a while. i know that with all of your good vibes, prayers, and mojo she will get the news that there is either no change or those damn spots have shrunk. anything else is just not acceptable. she is also one hell of a fighter, and i know that she too appreciates all of the support and good vibes.

i hope that you all have a really good weekend. enjoy it. make the most of it.

thanks for all of the love and support and vibes that you are sending my way -- and to mary and beth -- and please keep sending my sister kim good vibes as well as she continues her recovery from surgeries. i get to see her this weekend which i am very much looking forward to.

enjoy your weekends.

xoxo





Tuesday, March 21, 2017

funk

this has been a long week and it is just tuesday.

sunday night my feeding line got an obstruction in it somehow so we ended up going to the ER at midnight to see if they could work some magic to get the line free. luckily they were able to and we were able to come back home around 2am to start the feeding. that was a long night with little sleep and then we had to head into work. grueling.

today were my follow up appointments.

i wanted to hear that we could take out the feeding line.

that is not what i heard.

we met with the nutritionist and we are going to touch base on thursday to see how it is going. i am going to do one less pack of formula starting tonight and try to increase what i am eating through my stomach. my oncologist anticipates we will do feeding through the weekend and then decide on monday if we pull out the tube and i go to stomach feeding only on my own again.

we are going to cut down on the steroids starting tomorrow to start the taper off of them and are going to try to alleviate some of the other nausea drugs and see how i do. i will probably be tapering off steroids for the next couple of weeks.

we are not going to do an infusion as scheduled on monday since i am still on the steroids. we will do bloodwork, check vitals, and make a decision on the feeding tube. if it can come out, they can pull it out on monday while we are there. that won't be fun but at least it will be out.

i am feeling very frustrated and tired at this point. the feeding tube is a lot of work and makes it hard to maneuver at night and sleep because we have to be up multiple times. i am tired of being in the office with tubes coming out of my nose and across my face. i am tired of the looks that i get out in the public which range from "maybe i should stay far away from you to i feel very sorry for you". my legs are both incredible swollen from the steroids and so they are uncomfortable and walking with the cane continues to help, i am probably leaning on it more now due to my legs hurting so much than when i was just leaning on it because i was too weak to walk on my own without it.

i guess i would say that i am sick and tired of all of this that has been going on for now over 5 weeks heading into 6 weeks. basically a month and a half of feeling like shit and being limited in what i can do, what i can eat, what i can do for myself, living my normal life, etc.

so i am going to be in a funk for a few days, and that is fine. i deserve to be. these weeks have been hell and at some point you just have to allow yourself to be angry, sad, frustrated, etc. and that is where i am. i don't feel like putting a positive spin on it or looking for the bright side. this is a rough patch, i will come out of it at some point like i always do. but for now, i choose to be in this space.

thanks for all of the support as we continue to move forward. i do really appreciate it and it helps to know that we have so many that are supporting us through each day.

i hope that your wednesdays are good ones. please keep those vibes going to mary, beth, and kim - they need them too.

anywhere i fight, you fight.

and as always, there is certainly more fighting to do.

Sunday, March 19, 2017

tired + vibes for beth + vibes for mary + vibes for kim

our weekend was low key.

stuck pretty close to home for most of it. i did get out a little bit to a shop and to do some girl scout cookie drop offs with malena, it was nice to be a passenger and get to see some of the awesome blue sky that we had today.

i am feeling pretty tired tonight. definitely can tell my strength isn't back but am feeling a little bit stronger each day i think which is a step in the right direction.

all has gone as well as it can with the night feeding into my intestine. it is just hard to wake up multiple times a night and then try and go back to sleep. hence being really tired during the day.

i have follow up appointments with my oncologist on tuesday and some bloodwork and we will hopefully get an idea of how much longer the feeding tube will need to remain in. it is making the back of my throat incredibly sore and making it sore for me to swallow so i have been using some jolly ranchers to help alleviate that pain a bit for me.

in addition to how things go for me this week, i would like to ask for you all of your vibes, mojo, and prayers for three others too.

my sis-in-law kim continues to do well in her recovery from her two breast cancer surgeries and she is home and doing what she can to recover well.

my friend beth has scans on thursday to see if the spots on her lungs have changed at all. we will definitely want to hear that there is no change, and in the best scenario that they have shrunk all on their own. she will get results on friday.

my friend mary in wisconsin who found melanoma tumors in her leg again starts her treatments on friday. so we need to send her tons of mojo that the treatment does what it should and those tumors get annihilated.

so there are lots of things that we need to go right this week so start kicking up your vibes and all of your good stuff to help some positive things happen this week. we all need them.

i hope that your weekends were really good ones and that you go to do something fun, enjoy some blue sky, read a good book, take a nap, send some happy mail, do something that brought you a little bit of joy.

here comes the week, here we go, let's hope it is full of good things and good news. xoxo



 


Thursday, March 16, 2017

brutal

"experience: that most brutal of teachers. but you learn, my god do you learn"
(c.s. lewis)


we are tired. exhausted is probably the right word actually.


doing feeding through nose tube at home requires waking up at least every 2-3 hours to check the line, take meds, adjust if the alarm is going off, etc. so it makes for a long night, and more complicated then when the nurses had the ability to do it all solo. doing it all at home is a different beast for sure but we will continue to get used to it because we simply don't have another choice.


my feeding through the tube lasts about 12 hours for each run now, and i am still also trying to eat some food through my mouth to get it into my stomach in addition to the intestine where the feeding tube goes. it is a careful dance now of when i eat compared to when we start the line feeding to find the right balance of nutrition but not dependency on either feeding mechanism. obviously the overall goal is for me to go off the feed line and eat only through my mouth. but my appetite and my pancreas is not there yet.


i decided to head into work for a bit today and it was nice to see familiar faces and not the four walls of the hospital room. it was an odd experience to go to work with the tubing coming out of my nose and across my cheek and down my face, walking with a cane, jeans and a hat on because i knew i couldn't do it if i was uncomfortable on top of everything else. i didn't do a full day and that was a good call. i had reached my limit by the time that i walked out the door mid-afternoon.


we expect to do the home feeding through at least a good part of next week. i have doctor appointments next week to check in on how things are going. the home feeding will always start at night so i don't have to do tube feeding when at work or outside of the house. i am thankful for that, i was dreading having to do the feeding outside of the hospital or our home.


so we will see how tonight and tomorrow goes, and continue to carry on.


there is of course much more i could write about on how i am overall feeling these days but i am just too tired to write much more - that will all come with time.


i hope that your weekends are good ones. as you can imagine, ours will be very low key as i rest and try to gain strength and getting my stomach/pancreas on the mend. maybe also sneaking in beauty and the beast if we are up to it.


have a great weekend, thanks for all of the support and love and vibes.


happy friday peeps, have a good one. xoxo





Wednesday, March 15, 2017

Hospital... We're Home

The hospital stay is over.  Its been a long day and we're both ready for bed so we'll update more later but wanted to share the news. 

-B

Tuesday, March 14, 2017

hospital stay day 5

i am going to do a short update tonight, and as you can tell (no caps) this is me writing. my super guest blogger is getting a night off while he checks in on some things at home.


today was a long day.


i did not get much sleep at all last night.


i did not feel good through the night, had vomiting in the middle of the night, and then we had tests and vitals and then the sun was coming up.


i did get out for some walks today around the hallway, trying to get the strength up that i have lost in this last month. month. down for the count for a month. that is insane but that is the reality. my ass has been kicked. it is official.


but today, we got the huge feeding tube out of my nose, and eventually got a smaller one in - seems like whenever i leave here i will be taking a feeding tube connected to me. which i was hoping would not be the case.


the removal of the tube was not fun. crying. bloody nose, some more tears. then they got the smaller one in, more tears, and it got put it in wrong. so then we had do renter it in and pull the wire out. that wiped me out.


we went off the feed for a few hours so we would see if i got my own appetite back. i did a little but am still not eating much at all. we will see what tomorrow brings.


the tube feeding starts again in about an hour and will run through the night.


we will see what all of this means for a shot to go home tomorrow.


thanks for all of the love, mojo, messages, prayers. we really appreciate it. this last month has been really hard, i am hoping that we are really close to getting on the other side of it.


i miss my life.


i still believe that this year will be full of magic, it is just hard to see it from within these walls.


happy wednesday peeps.


anywhere i fight, you fight.


and there is no doubt we are currently fighting.


xoxo


++++ sidenote: they are letterpressing more "empathy, kindness, respect" shirts that i had wrote about in the blog a few weeks back - great cause - if you are interested, click here