tug o' war

the nausea continues. mornings are especially kicking my butt right now, by the afternoon it starts to decrease. i feel like the interferon is on one end of the rope and is just constantly pulling its weight against me. since i didn't let it stop me from going through daily activities while i was doing my shots, i will be damned if i let it stop me now. so i continue to hold on to my end of the rope, i know it will give up at some point. just a matter of time. 

i have been having very strange dreams mixed with some nightmares that are not allowing me to get much sleep lately. i am so tired all the time. i think that i could take a nap for a solid week and feel like i need more rest. i am pretty sure that my schedule doesn't allow for a week of napping, so i don't think that is going to happen. hopefully some restful nights will.

on a good note for the day my friend ellie's dad got clear scan results in one of his first post-cancer treatment scans. take that cancer. i know that he plans for more of those types of results to come, so you might as well give it up. put your tail between your legs and head out.

at days end, i got to do a fun craft project with malena, watch an episode of dora, play with her while she took a both, and read dora (do you notice a theme?;) books. all in all, the good  outweighted the nausea today, as it usually always does. 

great incentive for tightening my grip...another day of pulling begins.

swim

treading water. that is what i feel like i am doing these days. not sure how to move forward, so staying in place until i figure it out. but you can only tread water for so long before you have to get back in motion. this time post-treatment has continued to be tough on me as the treatments are done, some side effects remain (super nauseas again this morning, and couldn't put my heels down on the floor at first because my muscles ached so bad), i am not focused on a specific goal like reaching the last shot, i am very emotional...the list goes on. there was a long list of things that weren't or couldn't be focused on in the last year for different reasons that are now constantly on my mind - like, do we try to get pregnant again and think through the reality of what that now means (like missing scans while my recurrence rate is high). in the last year, i have had to be taken care of, i am way better at being the one taking care of those i love. i have had conversations i never thought i would with barrett and neither of us are the same, how could we be considering the things that we never planned to or wanted to talk about but became a necessary reality. the things that aren't said out loud but are heard. the care-giving and the care-taking. it all adds up. but it all gets back to the vows i wrote about earlier this week, in sickness and in health, in good times and bad. looking forward to the health and good times. i will start to tackle that list but am going to give myself patience to check things off of it when i feel like it. that is a tough expectation to put my on myself because i want things checked off asap and giving myself time is not one of my strongest qualities. i know that. i am working on it - now more than ever. so i think that i am going to just let myself tread for a while longer, i am happy just to be here - the rest will come. i am a strong swimmer, so time is on my side.

the ties that bind

"an invisible thread connects those who are destined to meet, regardless of time, place or circumstances. the thread may stretch or tangle, but it will never break. may you be open to each thread that comes into your life - the golden ones and the course ones - and may you weave them into a brilliant and beautiful life"

i found this piece in a reclaimed frame yesterday by sugarboo designs (i have one or two other pieces of theirs and i love them, i pretty much love every single piece they have actually) at fireworks which is one of my most favorite stores on the planet. it is a little place of happiness for me, i literally feel happier when i walk through the doors. i had a couple of minutes yesterday with the rare opportunity to pop in to the store. i just love wandering around the store and since my opportunities to do so do not come often, i thoroughly enjoy the time when i have it. i saw this piece hanging on the wall. it was one of those "i don't care how much it is, i have to have it" moments which don't come on too often. but when they do, they tend to happen at "anthropology";) 

i really connected with the text, and my brain immediately flashed in a rapid fire sequence to people that i have known in my life. those that are in my life now. those that are not physically here anymore. those that were previously very close to me, but no longer are for different reasons. those that were friends/acquaintances in different phases of life. without those interactions, i wouldn't be the person i am today.

i am pretty happy with the person i am today.

being reminded of that in an unexpected moment was worth every penny.

detox

i am still not feeling a whole lot better as the interferon continues to work its way out of my system. it is putting up a good fight. last week i continued to be nauseas and have muscle aches, mornings were particularly tough. on sunday, out of nowhere, my chest got really tight and i got really sick to my stomach - i was actually wondering at one point if i could be having a heart attack. i was down for the count from that point forward on sunday. the couch and i did not part ways for much of that time. today i was so nauseas in the morning that i felt like i had done a shot last night. if we hadn't got rid of the interferon and the needles, i might have thought that i had done a shot while sleepwalking since i felt so crappy. my nurse at the oncologist office said that some patients have triggers post-treatment where their bodies will unexpectedly kick into gear with side effects as if they were still doing shots, and that those triggers can happen for a while after treatment ends. oh goodie, more fun to look forward to. my right side is still sore, and has been really sore since the episode on sunday. we will continue to monitor over the next week or so to see if the pain decreases again. my mood is not great (that is being overly generous with myself) and i have very little patience and am very short-tempered (super fun for those around me i am sure, not fun for me either). like malena's favorite mickey train movie (which i heard for the one millionth - yes, i am counting - time on the way home today), i will keep moving on the tracks. onward i go. one day at a time. choo choo.

in sickness and in health

our wedding day

                                        the first week of high-dose treatments at scaa

                             celebrating our anniversary and the halfway mark of treatments

yesterday was my friend kerry's wedding, a very special day. it was so great to be there to see her walk down the aisle towards brad as they began their new married life together. it was a beautiful ceremony and a fun reception (i even danced which only happens on rare events, kind of a like an eclipse), great to see a good friend so happy and to be able to celebrate with other close friends. a very fun day. i wish kerry and brad good health, love, adventures, and more joy than they can imagine. she is so deserving of this happiness.

as with all weddings, i thought of our wedding and the vows we took. when barrett and i were going to a clinic earlier this summer on survivorship, one of keynote speakers talked about the "invisible survivor". meaning that the main caregiver of a cancer patient was not the one with the diagnosis, but they too have survived cancer. i think that most people who know me are in some way affected by my diagnosis, they may go to their dermatologist more often or make sure that they wear sunscreen or make sure that their kids do or hopefully both. but for the day in and day out, the rough patches that not everyone knows about, the down and dirty hell of treatments, barrett stuck through it with me.

sticking through it means enduring a lot of different things...
- endless doctor appointments
- holding me when i was shaking so bad from chills during those early weeks of treatment
- giving me shots three times a week and knowing that it hurt me every time (not his fault as he was a great nurse) and giving me a towel to stop the bleeding
- watching the skin rise pretty high around the shot location due to the fluids being injected into my arm
- watching the roller coaster of my emotions and not ever being sure of when i would take an unexpected turn of emotions, not buying a ticket for the ride but staying on the ground to help steady me
- crying with me when i was having a tough time (which occurred more than i thought that it would)
- listening to me when i became upset at evening time on the day of a holiday, birthday event, celebrations, etc. because i was so overwhelmed by the thoughts that had run through my brain all day but that i never vocalized (how many more mom's days will i have? what would this day be like for them without me?)....i know that he had those same thoughts too, and so nighttime on those days was tough for both of us
- not letting me see some of the times when he was upset because he knew that i was at my breaking point and couldn't carry more than what i already had...though he didn't let me see those times, i knew he had them and that is a tough thing to know because i couldn't make it any easier for him just as he couldn't make it any easier for me
- going to a couple of things without me when i didn't feel well, and having the thought cross his mind that him and malena would have to go to these types of things without me if the cards didn't play in our favor
- hoping that i stuck to the promise i made him at the very start, i would fight as hard and as long as i needed to in order to beat cancer
- playing with malena so that she didn't focus on me not feeling well when i just couldn't play
- not letting on to others how rough i really felt when we were around family and friends because he knew it was important to me that the focus of whatever we were doing was not on how bad i felt
- supporting me when my hair fell out, when i had a wig, when i wore hats (still do), when i made the appointment to have my hair cut short (which i put off for a long time because i wasn't emotionally ready) 
- being a nurse and helping me to take care of stitches from surgery and from the moles that have been removed over the last year
- taking a week off so that he was the one who was with me for the first five days of my high dose treatments
- swimming with malena at her lessons when i was too sick to do it or had bandages that couldn't get wet, knowing that not being the one in the water with her was tough for me because it was a change in our normal routine and i hated that

since we got engaged, it seems that there has always been something larger going on in our lives - family health issues, me being pretty sick for 7 months before my diagnosis with celiac disease, malena's two surgeries at childrens when she was a year old, the loss of grandparents....i look forward to a time when we aren't shadowed by a larger issue in our lives.

though the view forward has not always been clear, i have always seen him.

a couple o' things

i love it when i get to the park and ride and i can't even get my door open to get into my car. yes, there is nothing better than having to climb in my car from the passenger side, over the console, to get into the drivers seat. the last time that i had to do that at this park and ride was when i was about 8 months pregnant, i am sure that you can imagine how fun that was. the last time i had to do this was in my parking garage at work about two months ago when someone parked over the line and i literally couldn't even walk between our cars. luckily this time, no one was parked on the other side of me by the time that i got to my car. with my luck, if there had been, i wouldn't have been able to get in on that side either and would have had to macgyver my way over two rows of seats from the back of the car. it could have been worse, that is what i told myself as i climbed over the console and tried to get my heeled boots in between the steering wheel and the seat. i love (hate) taking the bus. i love (hate) park and rides. i miss (in a big way) driving my car into work. i don't miss (at all) paying to park my car at work. trade offs.

potty training is really hard on a girl. very tiring. a two blanket, baby, and binky kind of tired. i totally sympathize. mommy will need a glass of wine this weekend, my version of two blankies/a binky/a doll. or maybe i will skip the wine and go to bed as soon as possible, both sound like excellent options at this point.

this was right before storytime and bedtime. perfect ending to the day.

we can do this, right?

if you are wondering what has been the focus of my time over the last week and why you haven't heard much from me, you have just probably figured it out. malena moved into a new preschool class at her daycare and they are a no go on diapers. we have been trying to move towards this transition, but now with the switch of rooms, we are essentially forced into 24 hours a day, 7 days a week, hard core and unrelenting potty training. endless laundry. accidents everywhere/anywhere/anytime. wet sheets. bribery with marshmellows. tears (her and me). crying (her and me, this potty training is rough on moms too). exhaustion (her and me, the disruption of a normal routine and all of the effort and angst is very tiring). reading dora books over and over again in the bathroom. debating a quick stop at the store for something that i really need versus the potential meltdown that could occur if an accident happens while we are there. i know that i did not appreciate as much as i should have going to the store with her in diapers and not having to think that i could be the reason that people hear "cleanup needed on aisle 8" over the intercom. i think that i smell pee everywhere i go. yesterday when i happened to be holding her when she had an accident, i realized that was the first time i had been directly peed on. check that box off of the list. all of this said, there have been successes and you know we all love those when they happen. i take comfort in a few things. one, most adults i know do not wear pampers, she will figure this out, it will just take time. two, i know moms that have kids that have been potty trained, they survived it, i can too. three, my friend ellie is going through potty training right now too (just to clarify, not ellie herself but her son willie:)), we can exchange tips on how to get pee stains off of our leather couches. we can be a little real-time mini-support group, we may need to meet in bars. four, barrett and i are potty trained, so she has some good genes supporting her in figuring this out. five, even though this is a rough patch, all of this in a big, messy, wet package - they are moments with her, and these are the moments the last year has been about.

skin

i got my stitches out on my left arm today. this is the first time in a long run that i don't have any stitches in my skin. it will be nice to not have to be my own nurse and change my bandages every morning. i will not miss that routine. still some healing that needs to happen. add one more scar to the growing list.

laughs

this summer my dear friend ellie sent me a surprise package o' fun in the mail. the package contained a card and a book i hadn't heard of before called "sh*t my dad says" by justin halpern. in the card ellie indicated that she thought the book was absolutely hilarious, and she thought that i could use some laughs. i took it on our family trip to minnesota, but malena was on that trip with us, so time for reading never really happened for me and so i didn't even crack open page one. on the trip to vegas without malena a few weeks later, i had time on the plane to read and i figured that book would be the perfect companion for the flight. my seat was in the middle between nerd and barrett. i think that i must have laughed out loud and then said "you have to read these lines" about 5 times each on the flight. as you can imagine, they were thrilled with my constant interruptions (but they did laugh) while they were trying to read their own books. the book has expletives the entire way through, so if those would be offensive to you, you won't make it far with this book. if you don't mind such things, you will likely find it as hilarious as ellie and i (and barrett who also immediately read it cover to cover in vegas) did. reading that book is the time this summer that i remember clearly laughing that hard, i think that i may have literally slapped my knee at one point (but there is no actual proof). it felt so good to laugh that hard, it was almost as if i had forgot what that felt like. i realized then how much i missed a good, side-aching, tears-inducing laugh.

caveat - i wouldn't talk to malena in this way. but, we are potty training right now which means a lot of laundry and clean ups when things don't go according to plan. when i was flipping through the book yesterday, i found this line again that made me laugh..."you are four years told. you have to sh*t in the toilet. this is not one of the those negotiations where we’ll go back and forth and find a middle ground. this ends with you sh*tting in a toilet.”

i packed up that book yesterday to send to my friend josh (josh - you are going to looooove it, i guarantee it) and was laughing as i put it in the mailing envelope. now josh will get the book and some laughs. the fun is on its way to his mailbox in wisconsin.

thank you ellie, you gave me something that i needed right when i needed it. perfect timing my friend.

in the middle

this morning i had a check-in appointment with my regular doctor. it is so nice to see her, i think of her as my gaurdian doctor angel since she did the original biopsy. had she not been paying attention, who knows how long it would have been until i had the biopsy. who knows what a delay in the diagnosis could have meant. who knows where i would be without her. i am glad i don't have to know the answer to that question.

after that appointment, i went back to seattle cancer care alliance (scaa) for my rib x-ray. i got a call late this afternoon, the x-ray came back showing no breaks or fractures. the pain continues as does the lack of a clear reason for it. i will check in with my oncologist and see if we are going to take any other steps, or wait and see if i feel better next week. aleve, you continue to be my constant companion. i don't know what i would do without you my friend.

i think that the stress of the last couple of weeks has caught up to me. i am so tired i feel like it is actual work to keep my eye lids open. at the same time, there are so many thoughts swirling in my head that are looking for a way out.

when i was at scaa yesterday, i had about 45 minutes between my last scan and my appointment with my oncologist. i had a book to read, but i couldn't focus. i spent the time just looking around and thinking that in the beginning of this all, i would never have thought that i would miss going there every four weeks. but, miss it i will.

scaa has been an unexpected place of comfort for me. everyone that is there has a connection to cancer - they are a patient, a caregiver, a doctor, a nurse, staff, etc. there is something to be said for being at a place where everyone in the building has something in common with you.

i feel less alone in the battle when i walk in those doors. strangers smile at me...especially when i have my patient bracelet on when i am doing tests. that is a sure sign you are there because you are a patient. i share eye contact with others with a look that says "me too". every single person that i have met there has always been so nice and welcoming. there are patients that are in different stages of different cancers. i am typically the youngest person that i see when i go there. sometimes i find that to be overwhelming because it means my fight will be longer than most. sometimes i find that to be incentive for me to keep going because i have a lot of life to live. sometimes i find it to be so sad i can barely take it. no one should have to be there as a patient, regardless of their age.

yesterday after my ct scan they made me wait for 30 minutes to make sure that i was ok before setting me free. i felt so nauseas from the test that i was just sitting in the chair and not moving. i was freezing cold so i was wrapped up in a warming blanket. an older gentleman was being escorted to a seat in the same area. i heard him say "i am going to take that seat right next to that pretty lady" and realized he was talking about me. i laughed and said i would love the company. that was my first laugh of the day and it was 3:30pm. he told me i was pretty. there have been many days in the last year i haven't felt even close to pretty. i drank my water and string cheese. he drank his oj and crackers. i had a buddy. i got to leave before he did, but i saw him again later in the lobby as we were both waiting for our next appointments. he looked at me across the room, i smiled, and he gave me a nod that said "you can do this, and so can i".

this week has been tough emotionally for obvious reasons. but, it has also been tough because i feel very out of sorts. i have had to physically remind myself that i don't have to go to the kitchen at 8pm to get my shot materials ready for barrett. my body wants to go through that routine. i feel like i have to sit on my hands. i still have the side effects of nausea and muscle aches. they tell me that i should start feeling better in about two weeks when the drug starts to make its way out of my system.

since my routines of the last 52 weeks have been primarily focused around my treatments, i am having a hard time not keeping that routine. there is comfort in routines, for better or worse. i won't see my oncologist every four weeks. i will have to feel for lumps/bumps on my own with no back-up from him on a regular basis. i feel this overwhelming sense of responsibility to constantly be on surveillance now for myself. i don't remember what it feels like to feel ok. i can't resume life as i knew it. i don't know what this new life looks like exactly. i am scared about the unknown of the future, but i do know that i don't want to live in constant fear of recurrence. i need to find middle ground. i am not sure how to do that. very curious as to where i will end up. a new journey begins.

one step at a time. deep breath. here i go.