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