jackpot

i told you that i would buy a lottery ticket if the news was good. as you can see, i not only got good results today but i will very rich on friday the 2nd;)

the scans came back good. the spot on my lung has not increased. they saw an anomoly on my liver but could tell it was not anything to be worried about. the areas around where my melanoma were removed looks good, though there are some teeny tiny abnormalities they are not at a size to cause concern. overall, there are no indications that something is wrong. the relief is palpable.  it hasn't really sunk in for me yet.

the pain in my ribs remains unknown. i will go in for a rib x-ray tomorrow or Friday, my oncologist wants to see if the x-ray shows a cracked or fractured rib. one more round of tests coming, but i will take a cracked rib over other possibilities in a heartbeat.

i am so nauseas right now due to the liquid i have to drink for the scans. i feel like i am as green as the incredible hulk. there is much more that i want to say but i need to lay down and rest for a while.

thank you for all of the good thoughts and prayers that you have sent me regarding these scans, they clearly worked.

hug your spouse, your kids, your pets, your friends, your parents, your siblings, or send a text message saying "i love you" to someone who you can't physically reach.

be thankful you have someone to love.

be thankful you are loved.

be thankful you have another day.

i know i am.

big day

my ultrasound and ct scan are tomorrow (wedn). i get the results at 5pm tomorrow with my oncologist. they are putting a request on the scans for them to be ready right away, so hopefully that will happen by my 5pm doc appt. typically scans occur on one day, and my appt occurs on the following day, which allows time for the scans to be read, etc. tomorrow will be different in that the scans and my appt to discuss the results will occur on the same day. let's hope that those directions for the scans to be read are followed.

these scans carry a lot of weight. they will show whether there are any changes in the area where my melanoma was removed. they will show whether or not the spot on my left lung has increased. they will show whether something is wrong on my right side. they will show if something we aren't even looking for is there. it may be that i will get lucky and there will be nothing new, there will be no increase in the spot on my lung, and there is nothing obviously wrong on my right side. that would be the jackpot. i would have to stop and buy a lottery ticket on the way home. maybe the results will be a mix. maybe i will strike out. less than 24 hours and counting. it seems like forever between now and 5pm tomorrow. not sure that i will get much, if any, sleep tonight as my head spins with all of the possibilities of what tomorrow may bring.

i haven't got much sleep in the last couple of days. the nightmares are back. when they hit, they come with a vengeance. i will spare you the details of this latest round. once they start, it is like they are on auto-play and when i try to close my eyes, the nightmare begins from the start again. hopefully tonight they will know that i have enough on my plate and will take it easy on me. they tend to not have a lot of sympathy on me so i am not holding my breath.

thank you for all of the support and kind words related to my post on saturday about my last shot, i really appreciate it. please know that i do see the messages although i have not been able to be very responsive.

i went in yesterday to have the stitches out on my left arm, and it was clear after one stitch was pulled, that my arm hasn't healed yet. i will go back in a week to hopefully have the stitches removed. one more appointment. maybe that will be my last one for a while.

i can only hope, and hope i do.

the final time

tonight was my last shot. i actually can't believe that this day is here. in some ways, it seems like yesterday i was going in for my high dose shots and coming home with an iv in my arm. in other ways, it seems like a grueling 365 days of feeling like hell almost every minute of every day. 20 high dose treatments at seattle cancer care alliance. 144 shots in my arms at home.

here are some things i will not miss...

- the pain of the shots in my arms - it hurt every time
- holding my arm after the shots to stop the bleeding
- feeling like i was keeping a secret from malena since i never let her see me take my shot
- the smell of the alcohol wipes that made my stomach turn every time
- the smell of the biohazard container that my needles needed to be kept in
- having to be harshly reminded three times a week that i am undergoing cancer treatments... perfectly good days that had the joy sucked out of them when the 8pm cancer curfew came calling
- trying to find a spot on my arms that didn't make me wince by just touching it so that barrett had a spot to aim at
- the constant nausea i have felt every minute of the last year
- the nausea when it would ratchet up and i was so sick to my stomach that all i could do was lay down, not move, take my nauseau pill that would knock me out, and hope it would be better when i woke up
- the muscle aches that never gave me a break...the times when my legs hurt so bad that i couldn't put my heels on the ground because the pain was so crippling
- holding my hair in my hands as it fell out in clumps in the shower
- the flat out exhaustion and even small tasks seeming so overwhelming
- not being able to honestly answer "i am doing good" when people ask how i am...my standard answering being "i am ok" which really meant "i feel like complete crap"
- my mood swings, knowing that i was getting upset many times without good cause, but also knowing i had no ability to control it
- being an emotional mess and never knowing when something would make me end up in tears
- having both of my arms hurt so bad that i just kept my fingers crossed that no one brushed my arms when they walked by me, grab me by the arm, or squeezed my arms when they hugged me
- the scar tissue that has built up in my arms (although i am not sure that i will be able to miss that because i don't think the scar tissue is going to go away)
- having to have barrett help me out of bed because i was in too much pain to be able to do it by myself
- having to pack up all of my shot supplies to travel or be away from home on a monday, wednesday, or friday
- seeing the phone number for the pharmacy light up on my phone every four weeks
- being asked if i wanted to refill my prescription when it was really the last thing that i wanted to do
- seeing the charges from the pharmacy on my credit card statement every month
- having to go to bed as soon as malena was down because i was so sick to my stomach
- the times when i had to lay on the couch and couldn't play with her because i was too sick
- not making plans with friends or family very often because i never knew how i was going to feel and it was emotionally easier to just not make plans than to have to cancel something i was looking forward to
- having to pay to park downtown because i was so tired and sore that almost everyday the thought of taking the bus was too overwhelming for me
- acting like i felt better than i did most every day so that the focus of whatever i was doing was not on me and my cancer treatments
- dreading sunday nights because it meant another round of shots was ahead of me, saturday through monday evening were my favorite days because it was the longest stretch between shots
- not having to open the refridgerator and see my interferon (which had to be kept cold)...every time i have needed to open the refridgerator in the last year i have been reminded of cancer...i never thought before my diagnosis about how many times i open that door in a single day
- having no appetite
- food and drinks not tasting good or like i know they should
- not drinking wine because it never really sounded good and made life tougher for me the next day
- telling people i don't know well that i have cancer
- having to have barrett give me my shots, which i know was just as tough on him as it was on me
- during high dose treatments when my teeth were chattering so bad from the chills that i thought they would break and fall out...when someone had to keep malena distracted downstairs so i could quietly sneak in and go upstairs without her seeing me because i was so sick
- seeing the box with my interferon sitting on the front porch when my monthly shipment had been delivered
- hearing barrett say "ready?" before the shot went in, always saying yes, always wanting to say no

i think you get the point.

i have purposely not drawn much attention to this specific day as i have felt strongly that a celebration would inevitably be followed by bad news. i try very hard to think positively, but my instincts have told me for a long time now to enjoy this day, but not to mark it in a specific way other than completing the last shot. i will quietly continue to breath in and out and find my way. though i have done the last shot, i in no way feel like it is over. i have a lot to work through and the reality is that i don't expect to ever be through it, just making my way with it.

my ultrasound today did not indicate what is causing my pain. we have moved my scans up to next wednesday, but it isn't clear yet when i will get the results.  i should have a better sense of that at the beginning of the week. the pain continues. no obvious indications on the surfaces of my organs in that area is good. now we just need to do the scans to see what lays beneath the surface.

luck. keep sending it.

interferon. you don't know how much i hope you were worth it all.

*needle photo by my superstar sister Denise Hamilton (nerd)
*arm photo by yours truly

keep them crossed

we did bloodwork today and that did not make the source of the pain (which continues) clear. tomorrow i have an ultrasound at 10. hopefully i will get some feedback on that by the end of the day. we are moving up my scans that i was going to have at the beginning of september to be either tomorrow or sometime early next week. in addition to the pain, i was really nauseas all day so it has been a long thursday. i am exhausted. but i expect to get little to no sleep since my mind is filled with anxiety and "what ifs" that will not allow for much rest. continue sending your luck. i need it.

cross your fingers

barrett's results are in and the mole was abnormal, but it was not cancer, and no other follow-up is needed. good news. we were due. it came early in the week which was nice so we didn't have to spend the entire week worrying and waiting about the results.

speaking of worrying and waiting, i have had constant pain since sunday on the lower part of my right side just above the bottom of my rib cage. i had hoped to get in to my oncologist today. of course the time that they had an opening today was not a time that i could get there by. so tomorrow at 11am i will go in and see what they think. i am actually hoping that we do a scan because i want to know if they see (or more importantly, that they don't see) something. if they didn't do a scan and sent me on my way for some reason, i would be even more stressed and anxious than i am now. we will see how it goes. i am not too proud to beg for a scan. something isn't right. maybe i pulled a muscle. maybe it is a tumor. let's hope for the former. i will let you know how it goes. fingers crossed again please.

this week i have been thinking about a video that i first saw last year. kristian anderson, an australian, made the video for his wife for her birthday which came after his cancer diagnosis. as i approach the end of my treatments, my mind is swimming with what seems like a million different thoughts about what lays ahead. this video was one of them so i thought i would share.

on a totally random note, i updated the actual blog with a great picture that my talented sister took for me. perfect picture (tnx nerd) for the perfect name (tnx rob).

long week

this week has been beyond busy. we are just about to complete one of the biggest work deadlines of my career to date, the days have been really long on this final push. we are almost there. in the meantime, that has meant leaving the house by about 6am and getting home around 8 or later depending on whether it is a shot night. brutal for me as long days make me increasingly tired, nauseas, and my muscle aches have been so bad that it is hard to move around much. but after all of my work on this deadline, i refuse to let my treatments keep me from being there with my team. i think that the interferon just wants me to remember that it can make going in as tough as possible. point taken. point ignored.

there has been some good news this week. my derm called and he got all of the abnormal tissue that was in my arm. big sigh of relief. i go back in a week to have my stitches taken out. unless i see a mole change, i won't see him again for a few months.

barrett goes to the same derm and he had an appt yesterday. the doc took one biopsy from barrett's arm where he didn't like the color of the mole. barrett has more moles than i do, so since my diagnosis, he will now go in once a year to get a check. the derm said he was taking the biopsy because although he wasn't really alarmed it is better to be safe than sorry. i couldn't agree more. i also think that we deserve a break, so we hope that the call this week says the biopsy showed that there is nothing to worry about (though worrying until the call comes is definitely going to happen).

it shouldn't be so quiet on the blog this week, stay tuned. enjoy your sunday.

loss

when we arrived at jim's service, there was a lone bagpiper by the door to the church. as soon as we opened the car door, we heard the bagpipes. haunting yet calming at the same time.

the service for jim was a beautiful tribute. lots of stories about his life from people who knew him in different ways, co-worker...friends of over 30 years...his mom (i do not know how she did that)...a baseball mom, etc. i knew before the service that jim was very loved, and seeing the large crowd of people there confirmed that. the honor gaurd continued to walk back and forth throughout the service from the front to the back of the church. there was something calming about watching their silent routine.

they had a slideshow that showed many pictures of jim with his loved ones and friends, it was nice to get a glimpse of his life through the years. everyone has those childhood pics with the plaid outfits and crazy hair that make everyone smile and laugh - even if just for one second.

jim and his family were very strong in their faith. their pastor said that about a week before jim passed he asked him if it was ok that he didn't want to die and that he wanted to see his children grow up. i don't think that there was a dry eye in the church at that moment. very hard. very real. very sad.

towards the end of the service, the bagpiper played amazing grace and walked around the perimeter of the room. those first chords of amazing grace always represent loss. when he was finished, over the intercom they broke into the live dispatch from the sheriff's office. they said jim's call sign over the radio multiple times, and then "jim orr, gone but not forgotten." i literally think that you could hear hearts breaking across the room, mine and barretts among them.

we decided to not go to the gathering afterwards, i didn't know if i could do that. that is ironic i know since the service would have been the emotionally toughest part of the day. i couldn't face someone asking me "so how did you know jim?" because i knew i would lose it and would simultaneously make a stranger and myself very uncomfortable.

i am very thankful that barrett was with me. i know that going was very hard on him. we had many of the same thoughts/fears that went unsaid. unspoken because we both knew what  the other was dealing with.  sometimes it seems just feeling it is enough, the words being said aloud make it hurt that much more.

after i finish writing this, i am going to write a letter to jim's wife and send my sympathy card. there are things that i want to make sure that she knows about my friendship with jim and what he meant to me, and writing will be the best way for me to do that. maybe it will bring just a little bit of healing for both of us.

i see his picture when i open facebook. i have emails from him in my inbox.

i like it that way.

decision point

tomorrow is jim's funeral in vancouver. i spent the early part of the week deciding if i would go. after thinking about it quite a bit, i have decided to go. i think there is a large chance that i would feel very guilty if i decided not to go, and that would be really tough on me. the emotions i know are going to come from attending the service are also going to be tough on me. i can work through those in time. i anticipate having nightmares again and that my emotions will be running high for awhile. attending jim's service will no doubt be one of the toughest parts of the last year. but, none of this is easy, if it was, it wouldn't be cancer. it is a very sad part of the journey. maybe there will be some closure for me in being there to say goodbye. note i said some closure, i have zero anticipation that there will ever be total closure. i wouldn't want there to be anyways, i want to - and will - remember him.

i had my dermatologist appointment today to remove the rest of the abnormal tissue from my left arm. the incision is about three inches straight across my arm, and there is about a two inch incision across the middle of that incision. i basically have a very painful frankenstein arm. aleve has been my best friend today. i have been my own nurse today changing bandages and wraps throughout the day. i got the pleasure tonight of doing my shot in my other arm which was - as it always is - a great (you know that i don't mean it) way to end my friday. barrett had the pleasure (you know that i don't mean it) of being my shot giver and nurse to help with icing my incisions and changing my bandages. the results should come back next week. stitches come out in two weeks. have i mentioned previously how sick i am of being poked and stitched? thought so.

off to bed i go to see if i can manage to get some sleep with my two sore arms and swirling anxiety about tomorrow.

will you take a $1 for this?

every summer (minus only a few) for as long as i can remember my family has a garage sale. the first one i remember was at our house in yakima when i was a little kid. various members of my family would get together and we would have a monster garage sale. in those days, i had a stand where i would sell cold pop and snacks. running my own concession stand was a big, big deal and i can recall going to the store with my dad to buy the pop, having my own cashiers box, making my sign, waiting on my customers, etc.

usually in august, family members get together with their "treasures" and we have the sale at my parents house. we have a very specific process. each family has their own specific color of tags, all items must be tagged with the specific cost, and each person can make decisions if they want to come down on a price for their own things. people usually start showing up and circling our garage sale about an hour or so early - the "early-birders" as we call then. then when we give the ok, they come running (i literally mean running) towards the one item they want to get to before anyone else claims it. game on at that point.

everyone marks their things before they came over on friday night for the pre-sale party, family only. we check out the goods that others have brought to see if there is anything that we can't live without before the sale gets set up saturday morning. saturday morning the sale usually starts at 8, so we are up early and getting the tables set and the boxes unpacked. the security team (typically the guys) keep the early-birders at bay until it is go time. there are donuts, coffee, fruit and other goodies for us to eat before the craziness begins. we have a $1 pool where family members can predict how much we will make that day. zach calls it "price is right rule" - closest without going over, minus bob barker and his thin little microphone.

once the sale opens, the craziness begins. after a few hours, the title of this blog comes in to play as people start trying to dicker, and sometimes we make a deal, sometimes we don't. it is funny seeing the stuff that people will buy, and if you watch us closely, you see some high fives - and some looks between us which says "wow, can't believe you sold that" - when the item we weren't sure would go is sold. when the day is done, we count up the tickets, divide out the cash, have some pizza and cold drinks and share stories from the day - as well as stories from previous sales. you would not think that garage sales would produce good stories, but we have had some hilarious antics and customers along the way.

my sister took the pic of me on the morning of the sale (what you see is less than half of what we had all combined when everything was out). i was really nauseaus in the morning and so i couldn't help get things out before the sale started, i got up right before we opened. that was frustrating because i could hear the buzz of the family moving in and out of the house. it is always a lot of work before and during the sale, cleanup usually goes pretty fast. but, it is hands down one my most favorite days every summer. i love the traditions of the day, but i love being with my family all day long most of all.

this year some of my parents neighbors started hauling random things out of their houses when they saw how busy our sale was. my cousin mark walked down to one of the other sales and asked how it was going. the guy said "pretty good, but not as good as that big one down the street." mark said "yeah, i know, they are pretty busy" and the guy said "well, from what i have heard, one of their kids lives in seattle and they buy abandoned storage units and bring the stuff down here for the sale. that's how they have so much stuff." that kid from seattle would be me and i think that story is about as funny as they get. as much as barrett and i enjoy watching "storage wars" now and then, the thought of us buying the stuff in abandoned units is hilarious. we didn't even take anything down this year because i just didn't feel up to all the work it takes. but next year i think that we will load up a u-haul just to give the neighbors something to really talk about;)

time to head for bed. i have my stitches out tomorrow afternoon from my biopsies so that is super exciting (insert sarcasm here). on friday, i go back in to have the rest of the tissue removed my derm wants to take from the area where the abnormal mole was. that is going to be painful because he will then stitch it up in the same area where i am having stitches removed tomorrow. but, if those tests come back clean confirming the abnormalities are gone, the pain will be worth it. that is the chant i will keep saying to myself on friday when he is working on my arm.

happy monday all - another week begins.....

*photo by sassy Denise Hamilton

sleep, i miss you so

i am really, really tired. i have not got much sleep this week, when i have been able to fall asleep, i have nightmares. i have had stretches of nightmares throughout treatment, they tend to come in batches around scans and appointments or other stressful times. i had already planned to have yesterday off to go to my oncologist appointment and then go to the mariner's day game. the plan for the m's game changed when i heard about jim, so after my oncologist appt, i came home and wrote my blog and hunkered down with my sadness. i took today off too, i was just not in shape to pull myself together and be around people. i felt proud i made that decision because i typically would have got it together and gone in to work. but, i have learned over the last year that work continues without me, i work with good and talented people. they can handle it. taking care of work is not as important as taking care of myself. i don't make that decision every time, but i am working on it and am better at taking time than i was a year ago. i plan to go back tomorrow to catch up a little bit and it is a friday so that typically lends itself to a little slower pace. i probably just jinxed myself by writing that.

this afternoon i ran a couple of errands on my way to get malena. after i took my shower, i forgot to put on my ointment and bandaids over my stitches (which i didn't realize when i left the house) and bruises. i had to run in to bartell's to drop off a prescription and picked up a couple of other things. as i was checking out, the cashier asked me what happened to my arms. it jarred me a bit because i am so use to having my bandaids on that i don't get questions typically and didn't realize until that moment that i forgot to cover my stitches. i told her that i had some moles removed, and she said that her husband has wanted her to have some moles looked at for over a year. she said it is just one of those things that she says she will do but never does. i felt my stomach do a complete somersault. i then immediately felt tears coming as i was barely holding it together to begin with. i am sure that it was just a second, but a ton of thoughts went through my head that i wanted to say to her - the primary one being run, don't walk, to the derm's office. listen to your husband, he sounds pretty smart. you don't want to go through what i have gone through. you could die. all i could get out was to tell her that she should really go and have those looked at. a very surreal moment. made me feel like i should create a pamphlet that i can whip out in similar situations - maybe like alli's 10 top ten list of reasons that you should go your derm asap. go. now. please.

i am going to take a couple days off from updates so the next update will probably show up on monday. btw, for those of you that get the updates via email, in most cases i have posted the blog the day before. i know that can make it confusing as to which day i am talking about when i refer to "today" or "tomorrow" in the updates, but you can see the date that i posted it at the top of the email. there may be a way to figure out how to have the emails hit on the same day that i post them, but let's face it, that might be just a little too techie for me to figure out;)

take care all, have a good weekend. wear your sunscreen.

goodbye my friend

today is a really tough day. my friend jim, who put up a hell of a fight against melanoma, passed away yesterday.

jim and i met through my friend kristina. kris knew jim and his wife from their son's baseball teams, and so she had put us in touch not long after my diagnosis last year. jim was also doing interferon treatments at that time, and so we found that we had an instant bond and many things in common....how the smell of the alcohol wipes used for doing our shots made our stomachs turn every time, we felt like we could smell the biohazard containers we had to put our needles in from a mile away, we hated doing our shots, food tasted weird, something sounding good for dinner but by the time dinner time came around we didn't want to eat a bite, work (i went back, he didn't), problems with insurance, fighting the cancer with everything we had, etc. i remember jim telling me once that he knew he was feeling really tough when even ice cream didn't sound good which was his favorite food. i told him i knew that feeling because when hot tamales, my favorite candy, don't sound good to me i am feeling pretty tough. jim was my real time kindred spirit and he made me feel less alone in dealing with the treatment and all that comes along with it.

jim's melanoma continued to spread and he spent much of the time in the last couple of months in and out of the hospital for blood transfusions and treatments. on june 12th, i did a walk with family and friends to raise funds for immunotherapy (interferon is a type of immunotherapy drug) research for fred hutchinson. i told jim that i was dedicating my walk to him, and wore a patch that day with jim's name on it - the picture above was taken right before the walk started (for those of you that haven't seen a recent pic, i lost most of my hair due to treatment so my long blonde curls are long gone). i sent the pic to jim on facebook on the day of the walk, he was in the hospital on that day, and his feedback that he liked the picture would be the last one on one communication we would ever have. i continued to receive updates on jim's status daily from a friend of his that created a facebook group for friends and family to get updates. i take comfort in knowing that jim was surrounded by friends and family yesterday because i know that he loved them, and was loved by them, fiercely.

jim's passing brings many emotions. overwhelming sadness. anger. anxiety. fear. though our stories after diagnosis weren't the same up until now, it doesn't mean my story won't change and that scares the hell out of me. it angers me because it shouldn't have had to be jim's story either. i hate seeing his life taken from him, and seeing him taken from his friends and his family - including his wife and their three children. it is all so cruel and unfair.

jim was featured recently in his local news for a trip that he got to take by ambulance to see his son play baseball. the video is at http://www.kgw.com/home/Sick-Washougal-man-gets-memorable-opportunity-125613003.html and the news article is at http://www.columbian.com/news/2011/jul/14/inspirational-coach-stays-in-game/.

when barrett and i attended a cancer survivor clinic last month, one of people presenting at a session talked about how the deaths of friends with the same type of cancer can be one of the hardest parts of being a survivor. he was right. death of a friend or loved one is never easy, losing a friend to the same cancer that you have makes the grief even tougher.

i had to go in this morning for bloodwork and my monthly oncologist appointment. we will do my next round of scans in the beginning of september after my treatment is complete. if those scans show no change in my neck/collarbone area, no increase in the spot on my lung, and nothing new shows up, i will move into a 6 month scan/appointment rotation with my oncologist unless i notice something is wrong (i.e., feel a growth, etc) or my dermatology appointments indicate there is a problem. 6 months is a hell of a long time and that absolutely terrifies me. tumors can grow and spread in 6 months. a lot can change inside my body within 6 months. i will have to find a way to live with that fear, because i also don't want to live in constant anxiety. somehow i will find my way because i have to. what i do know is that life will never go back to "normal" when treatment ends - physically or emotionally. i stopped having a "normal" on july 16th last year. i will take on finding a new normal, not sure how that is going to look for me yet, but with time i will figure it out.

if you send out good thoughts, or prayers, or you take a moment of silence - however you send your energy out into the world, please do so today for jim and his family.

jim...rest in peace my friend, i will - and already do - miss you dearly but will forever be thankful you came in to my life and that i was one of the lucky ones that got to call you friend. i will continue my fight against melanoma with everything i have in your honor.