for the ladies

i found this link this morning, have already watched it a couple of times (tears everytime) and had to pass it along. it gave me the spark to write this blog that has been brewing for awhile now...so while malena naps on the couch next to me, i figured there is no time like the present....

http://www.youtube.com/watch?v=u_4qwVLqt9Q&feature=share

i have been very blessed to be surrounded with amazing women my entire life. i am thankful for each and every one of you and for all of the things that you have added to my life. i would not be the mom, wife, daughter, sister, cousin, granddaughter, friend, aunt, sister-in-law, neice, daughter-in-law, etc. that i am today without you.

so ladies, this post and video is for you - i can't say it better than she does. but i can say thank you for your.......love, faith, hand to hold, support, good thoughts, prayers, cards, emails, encouragement, tears and for wiping mine, hugs, food, smiles, shoulders to cry on, facebook updates (i love those more than ever - i like getting to see life), texts, laughs, time...all of the great things that you have done for me. not just in the last year, but in all of the days i have known you. since my diagnosis, i haven't always known what to do, how to reach out, what to share, what to not share, or just didn't feel well enough to do anything besides dig deep and make it through the day. i have always known that you would be there for me in a second if i needed anything. some of you have told me (and i have known without you telling me but didn't know how to make it better for either of us) that you haven't known what to do, what to say, what i needed, what to ask me, what to not ask me. you aren't alone. i haven't known what to do either, and still don't in many ways. we will continue to find our way, i think my writing and you reading this blog will help.

this paragraph is going to be tough for you to read, and it is tough for me to write. there have been many times in the last year that i have thought about malena and what her life would be like if i was not around to watch her grow up (i totally plan on that by the way just to be clear). one thing i take comfort in when those dark thoughts come is that she is as lucky as i am because she has all of you. i know that no matter what happens, she will be surrounded by awesome women who will love her more than she can ever imagine.

her and i are both very lucky girls.

i love you all more than you know.

whew

i got the call late yesterday and it was good news. my right arm biospy was clear - no follow up needed. my left arm did not come back clear, but it isn't melanoma (insert huge sigh of relief here). he told me the name of the type of mole but all i heard hear him say is "it isn't melanoma" and then i couldn't focus on the other details. although the perimeters of the area removed for the biopsy are clear (i.e., he thinks that he got the abnormal area within the area removed for the biopsy), he wants to take more out in that area to be very confident he got it all. works for me. though this all means that i will get poked by needles again, i consider it more than a fair trade.

my dear friend kimberly just happened to be with me when the call came yesterday and i saw my phone light up with my derm's number. so ironic since she was with me last year when i got the the call. i looked at kimberly and told her it was my derm and said "here we go". i was so happy to not be alone when i got the call. i know she was sweating what he would say as much as i was.

i will get all of the info on my left arm when i go back in the next week. i hope that these results will start a run of good luck coming into my scans in august. i have already thought about whether that call yesterday was the only good news i am going to get for a while. i only let that thought creep in for a little bit and then i kicked it to the curb.

today i am going to breathe  easier, watch cartoons with malena, go to the park, eat some cherries, definitely some ice cream, and do whatever else we want to. the day is ours.

final shipment

today i got my last shipment of interferon to get me through the end of treatment. last weekend when they called i realized that would be the last time that i would have to go through the drill of ordering my next month's shipment. honestly, every four weeks when my phone would light up with the pharmacy's number i never wanted to answer. but, i did, because having to call back and wait when i am like the 100th customer would suck even worse. everytime they ask me "would you like to refill your prescription?" there was this little part of me that for less than a second wanted to say no - especially on days like today when i was down for the count all day due to nausea - but i kept on signing up for another month. so here we are, on the last shipment, which signals the transition that will occur over the next month as treatment ends. treatment ending makes me happy, anxious, fearful, unsure, scared, and a mix of other emotions and depending on the minute, i feel some of those emotions more than others. let the shot countdown begin.

tick tock

the picture shows what both of my arms currently look like. unfortunately, my derm biopsied two moles today - one on each arm. i have stitches in both arms and will go back in two weeks to get them taken out. i will get the results either the end of this week or beginning of next week, the nurse told me to not expect to hear this week on the results. perfect. i will  likely get the pleasure of waiting through the weekend too. love that. i got to top the day off with doing my shot.

i am so sick and tired of being poked and stitched. blood tests every four weeks when i see my oncologist. the needles that are used to numb the biopsy area. the biopsy itself. the stitching up of my skin. during the high dose treatments, having needles put in my arms to get my iv in place, sometimes multiple times in one day if they couldn't get my veins to cooperate. my shots three times a week for treatment.

i also really hate the fact that i have scars all over now. the only places that i don't have scars are my legs and from my neck up. i have scars on both arms, and just added two more locations today. i also have scars on my stomach, my back, and my collarbone area. the scars serve as a constant daily reminder to me of the melanoma and i hate that. i can't change my clothes, look in the mirror, take a shower, wear shortsleeved shirts, wear my swimsuit to go to lessons with malena, pick up a bag to put on my shoulder...really i can't do anything without seeing atleast one of the scars. if the ones on my arms and back are covered, the ones on my collarbone are always visible. it is just one part of this that i really am frustrated by, even on a day when i don't feel like complete crap, i can't physically get away from it.

waiting on test results is also not at the top of my fun list. i just want to know what is going to happen next, and not play the "what ifs" around in my head over and over again. those "what ifs" creep in and they are harder than hell to get rid of until the results come in. i am sure that you will hear more from me on waiting on results, because i am already stressed about the waiting i will have to do in august on my scans and those aren't even scheduled yet.

after my appointment, i had the ability to catch my breath before i came home thanks to my wonderful mom-in-law that watches malena on mondays. i was emotional when i left the docs office, and i made myself a deal when i started treatment that i would not let malena see me upset or not feeling well unless i just couldn't help it. i have never once let her see me getting my shots. there have only been a few times that i have had to lay down while she is awake because i was so nauseas, but otherwise, i have tried very hard to not make her feel like something is wrong or that mommy is upset or not feeling well. it has been very tough at times to not let her know that i don't feel well, but that has always been important to me and it is one thing that i can control. so, i got myself together and came home, but of course malena saw my bandages right away when i took my coat off and she said "mommy has two owies". we left it at that. i don't think that she thought twice about it the rest of the night. mission accomplished.

as i was driving home, one of the songs that has been on my ipod rotation lately came on. the song is called "jar of hearts" and is by christina perri. i have listened to this song many times, but today driving home the chorus took on a different meaning for me than what is actually intended by the lyrics documenting a heartbreak....."and who do you think you are, running 'round leaving scars, collecting your jar of hearts, and tearing love apart, you're gonna catch a cold, from the ice inside your soul, so don't come back for me, who do you think you are." enough said.

i am taking my stitches to bed now, and am going to try and get some sleep, so i can get up tomorrow and move through another day.....which, stitches and scars and all other things considered, i am thankful for beyond words.

xo, alli

it's that time again

tomorrow i go in for my 6 month dermatologist appointment - i am on a 6 month rotation with him now, more often if i see something suspicious. every time i go in to that office i feel like it is last summer again. i am anxious for the appointment because he could say there are some moles that he wants to biopsy, and if he does that, i will be poked and stitched, then the waiting comes for the results. i could get lucky and he will say he doesn't need to biopsy anything, if he does, i think i will get a lottery ticket on my way home because that hasn't happened once since i first met him last year.

though anxious, i am less anxious for this appointment than i am for the scans that are coming up in august but are yet to be scheduled. atleast with my derm, he is looking at my skin which i can also see - and i am now on constant surveillance of my skin. but, with a lot of moles and freckles, it is tough to remember every nuance of every mole and that drives me a bit crazy. i have a few that i will specifically be asking him about.

i would be very happy to leave the appointment tomorrow and not have any more scars on my stomach, arms, back - or any other part of my body - and most importantly, to not have to wait on results.

fingers crossed.

best birthday present ever

                                                               zach's first christmas 
                           

    self-portrait at the casino bar in vegas

i remember the morning of my 15th birthday very clearly. i was at my best friend kristina's house and my mom called. she told me that a package had arrived in hoquiam for my birthday. for about two seconds, i thought "could it be clothes? new music?" and then it clicked - she was telling me that my nephew had made his way into the world (very creative mom!). my mom and i drove to hoquiam that day to see him. i remember walking in to the hospital room and meeting him for the first time. as i held him, he made me something i had never been before - an aunt.

when zach was just a baby and i was still in high school and had the summer off (i so miss those days) i got to babysit him for a week or two at a time. i loved that time because it was just me and him hanging out. i haven't had that much one on one time with him since. watching him grow through the years has been such a fun ride - from the days when he was little and we would all go trick or treating, watching him play sports through the years, being there for the milestones like graduation, etc. he is also one of my favorite people to laugh with, he has had some of the best one-liners i can remember, and many of the laughs at my parents house have been prompted by something he said.

so, as we celebrated our 36th and 21st birthdays this year, it was a major milestone year for him. we went to vegas with all of our immediate family which was so fun because it is few and far between that we are all together for a vacation. i had plans to raise it up with him on our birthday because it wasn't a shot day for me. but, life had other plans. i woke up on our birthday with some of the worst muscle/joint aches in my legs that i have had in the last year. it was so painful to walk so it was a long day physically and emotionally. i made it out to dinner, but after dinner i had to head for my room so i could put my legs up. the following day my legs felt a little better but i had to do my shot that night, and there is no rallying for me on shot nights. i was so frustrated and angry that i felt so crappy on our birthday, so i held out hope that our last night i would feel good enough to stay out. i guess the treatments gods finally decided to cut me a break for a small period of time because on our last day my legs didn't hurt too bad, and i was not nauseas to the point of being completely miserable.

so, i got to go to the casino bar with zach, play some video poker next to him, and buy him some drinks. i even had one myself which doesn't happen too much these days. as we were sitting there, it seemed like it was just yesterday that i got that call from my mom. now i was sitting next to my 21 year old nephew who could play the slots while having a drink, where does the time go? by the time we called it a night, it was after midnight. i can't remember the last time i was up that late (since starting treatment, malena and i basically have the same bed time), but it was so worth it. i look forward to more late nights of hanging out if he doesn't mind his aunt alli tagging along;)

zach has always been - and will always be - the best birthday present i have ever got.

while on the topic of vegas, there is a blog called "william fighting cancer" (http://williamfightingcancer.blogspot.com/) that i have become attached to. though our stories are not the same, he is committed to fighting melanoma and kicking its you-know-what. i just got an update from his blog called "odds". i connected with his words, and especially the last paragraph. if you read it, i am sure you will understand why.

the call

tomorrow will be one year from the day last year - the day before my 35th birthday - that i received the news that i had been diagnosed with melanoma. i can remember that day so clearly, and the events play back as if there were in slow motion.

i had gone to my general doc when i was really sick with a flu bug and was begging her to give me something to end my misery. when i saw her, i had a zip-up fleece on. when we we talking about the flu, she noticed the mole on my collarbone area. she said that she didn't like how it looked, and thought that she should do a biopsy. we ended up doing the biopsy in july the week before my birthday.

on friday the 16th, i was getting ready to go into work and missed a call from my doctor while i was in the shower. when i listened to the voicemail, i immediately knew it was cancer although she didn't tell me that. the way she talked and her tone told me it wasn't good. but, a small part of me held out hope that i was wrong. i returned the call but she was in with another patient. so, i headed into downtown seattle to work hoping that she would prove me wrong when she called back. i got to the office at about 10:10am. my good friend kimberly - who had the office next to me - popped in to catch up. about 5 minutes into our chat, my cell lighted up with my doctor's number. i remember telling kimberly to wait just a second while i took the call. what i had hoped my doctor wouldn't tell me is exactly what she told me. the biopsy confirmed it was melanoma, and she had booked me an appointment immediately in bellevue to see a dermatologist and i needed to leave for it right then. i immediately started to cry and tried my best to write down where i was supposed to go. it was obviously clear to kimberly that the news was not good, but she stayed with me, and i will never forget that. i can't imagine how much harder it would have been to be by myself when i had got the news. kimberly also held it together to help get me on my way, and i know that must have been really hard for her. she would tell me later that she was barely keeping herself together, but was focused on getting me on my way and figured she could fall apart after i walked out the door.

i picked up barrett and we went to the dermatologist appointment. he looked at the melanoma and indicated that i needed to be referred to UW and he would call them and ensure that they called me on monday to schedule an appointment.

within an hour, my life turned upside down. i remember thinking how ironic it was to get the news the day before my 35th birthday and my plans for a fun weekend to celebrate. i remember calling my mom, which would be the first in a series of the hardest calls i have ever made. i remember wondering if i would live to see my 36th birthday. i remember thinking of malena and that the thought had never crossed my mind that there was a potential i wouldn't see her grow up. i remember my brain going into overtime with a million thoughts at the same time. i remember that my parents were on their way to our house when i called them as they were coming up to celebrate my birthday. i remember opening the door when they got here, the looks on their faces, and thinking that i was now their daughter with cancer. i remember thinking that my life, no matter what the outcome was, would never be the same.

i was pretty much a walking zombie on my birthday - clearly still processing the events from the day before. i hung out with my mom and sister in the morning, and i literally felt a gray rain cloud above us every step we took. barrett took me to dinner that night, but it was tough to not talk about the cancer when that was probably the one thing we didn't want to talk about. i remember getting texts and facebook messages from friends and family wishing me a happy birthday and thinking that they didn't know but that i would need to tell them - and that i had no idea how i would tell them the news.

i think that july 16th will be a day that i will always have anxiety around. i have had this really anxious feeling for awhile now that something bad is going to happen tomorrow - but the rational part of my brain knows that is not going to happen. i have had dreams this week that my phone rings tomorrow and it is my doctor's office. i think that my brain is just replaying last year again and again and i can't shake it. maybe next year the 16th will be less anxious. i hope so. 

there will now forever be dates that are tougher than others for me - july 16th, july 23rd when i had surgery, august 5th when we met with the oncologist to talk about my prognosis and options, august 30th when i started treatment....

sunday will mark my 36th birthday, and i am so very thankful for another birthday to celebrate. i will be with my newphew zach as he celebrates his 21st birthday - we share the same birthday, and that will be a topic of a blog next week. though the last year has been my toughest by far, i am here and i have made it this far - and i plan to keep on making it.

look for another update mid to late next week....

xo, alli

melanoma mom

i found a blog called "melanoma mom" recently. i can identify with many of the things that she writes about. her post today really struck a chord with me, as i could identify with so much of what she wrote, and so i thought that i would share a link.... http://melanomamom.blogspot.com/. at the end of each of her posts, she writes about what she is thankful for on that day. today i am thankful for her contining to share her story.

what's in a name

when i was thinking about starting a blog, i talked to my good friend rob and told him about my idea. after confirming he didn't think it was the worst idea he had ever heard, i asked him for some suggestions on the name because i hadn't come up with something that i thought was the perfect fit. he came up with a great list (thanks rob), but i chose "alli's equilibrium" because it is about balance. i don't expect every blog will have a cancer focus, although cancer probably affects everything in my life to some extent - in ways i might not even realize. so, between all of the things that i may blog about, i hope that overall there is balance between happy and sad, funny and serious....you get the picture. 

speaking of pictures....since the last two days the balance has been tipped in favor of nausea (more so than my standard 24/7 nausea), i decided to include one of my new favorite pics. one of malena's favorite games right now is "chase me, chase me" (also known as "chase you, chase you" if she is the chaser). this pic is from last saturday when we had an open field to play in at a park near our house. my sister denise got this shot. in that moment, i was just having fun, and not thinking about how crappy i felt. i love this picture and i loved that moment.

my sister denise (who i call nerd, and will likely refer to as nerd from this point forward on the blog) will be providing pics along the way for me. super excited to have my own blog photographer...i am a lucky girl.

* photo by denise hamilton

finding equilibrium

i never really thought about having a blog, but truth be told, i hadn't really thought about a lot of things before july 16th last year. on that day, i received the news that i had been diagnosed with stage III metastatic melanoma and my world came crashing down. exactly one week later, i had surgery at UW to remove the melanoma and one lymph node. within weeks, i started high-dose interferon treatments at seattle cancer care alliance, one dose five days a week for four weeks. following that, i started a regimen of interferon that includes doing shots of interferon three times a week at home. in total, i will have done a year of treatment when i do my last shot in august. the interferon comes with many side effects, which i am sure will be a topic of a blog at some point. my next round of scans will be in august. my last scans showed a spot on my left lung (we don't know what that spot is at this point), and so fingers are crossed that the spot has not increased when i get those upcoming results. that is a very quick background for what seems like a very long story.

as i approach the one year anniversary of my diagnosis, and continue to dig deep to get through the treatments, there seems to be many things that i want/need to say, and i figured that a blog may be a good way for me to do that. i have no clue what i am doing, but if you are reading this, i must have done something right;)

i am excited to start this blog and see where it takes me.....i don't know where life or this blog is going to take me, but i would love to have you along for the ride.

xo, alli