for beth

i will catch up on me and this week that is to come, but this post is for beth.

this friday she goes in for her next round of scans. i just know that they will come back all clear as they have before and she will keep moving farther and farther out from that original diagnosis and year of treatment and surgeries. even though i am totally convinced she will get good news (her results come on monday), please send her your prayers, good vibes, and mojo.

you know how i feel about sharing stories, and so i thought that i would share beth's words directly so you can hear it from her on how she feels as she heads into this week.

i know that we both appreciate all of the love and support that comes our way. keep it coming.

you've got this beth, that i know for sure. love you. fight on. xo

My scansxiety is in full force right now as my scans are one week away.   I am starting to have weird anxiety dreams.  I can feel it in my body, my breathing, how emotional I am.
I had to call the radiology department this morning because once again they didn't send me any instructions for the scans and I am pretty sure I have to fast.  Which I do.  Then I got the clarification of my labs because they had forgotten to place the order.  Never stop being your own advocate.

I go in now around 10 am for labs next Friday.  Then onto my scan at 11.  Then I go in for the results at 11 am on Monday June 6.  So that I don't sit and worry all weekend about the results my parents and I are going to Hood Canal for the weekend where I can worry all weekend there.... We will plan some activities to try and distract me. They get in town Tuesday and it will be so nice to have them here.  Unlike last year I don't have 2 other procedures and tests while they are here.  Only the scans.

I of course worry about the results and what I will do if I hear that the cancer is back.  Will I see my world crumble around me?  How would I get the energy and strength to do treatment again?  But people do find it in themselves to do it again.   I was talking about this with my counselor this week and if I find out the cancer is back will I question things I did and wish I would have done differently.  She told me something that is helpful, she reminded me that it's not like I am doing anything knowingly bad for me, like smoking cigarettes.  Everything else known right now is not scientifically based.  Like me getting cancer, random.  If it comes back, random.  At least with what we know now.  I know I can't control everything.

I have had a lot of appointments in the past week.  Last week I met with my naturopath.  Still talking fatigue and neuropathy.  We are trying some new supplements for a couple months to see if those work.  He also is thinking about trying this laser treatment on my feet.  The engineer in me asked for research before doing that.    One of the lingering side effects of chemo is dryness  Dry skin and for me dry eyes.  So my acupuncturist had this treatment that required me to go in 2 days in a row to help with dry eyes.  They feel better but I am not sure if it's a dramatic difference yet.  But that one has been a real nuisance side effect.   Then I also saw my fatigue/active doctor yesterday.   Overall he thinks I am doing good and understands my frustration with not feeling like me quite yet.   So he asked me a lot of questions and overall I do have more energy during the day, but then I still crash and need more sleep on the weekend.  I wonder if my bosses will believe my doctor ordered me to take short naps during the day?  So I need to keep with my conservation of energy plan and my workouts and walks.

Last weekend I served breakfast at the SCCA house. I chatted with a nice woman from the Bay Area who is up here with her husband.   He is getting treatment for their last effort at treatment.   And she was remarkably hopeful and in good spirits for that news.  I still really enjoy serving there and meeting people.  They do come in all shapes and sizes.
Alli is hanging in there.  Like with all treatment the side effects are building.  She goes in next week for her second cycle.  They need to come up with a good plan for her nausea that doesn't make her so exhausted.  I remember living on nausea meds so I get that feeling, and it's an awful feeling.

This weekend brings some fun and rest.   Going to the Seattle International Film Festival, a Mariner's game and picnics and gatherings with friends.  And hopefully I get to enjoy the rest of the plans I have made in June with a clean slate for a few months!
Thank you for your love, support and prayers.

the lone ranger

met with my oncologist today. man, i am thankful for that guy every single day of my life.

as i totally anticipated since it was never mentioned by the nurses, yours truly is the first patient he has ever seen with swelling like mine from treatment.

i will take my curtsey now thankyouverymuch.

because of course if anyone is going to have a side effect he has not seen before, it has to be me. because if anyone is going to be the lone ranger, it has to be this kid. it was that way with my previous treatment, i had extreme side effects that most all other patients do not have (like losing all my hair - which mine is currently starting to already thin a bit).

honestly, i totally predicted this one. on a good note, my breathing sounded good when he listened to it (which makes my mom super duper relieved), which is a really good thing. i mean, that kind of goes without saying, right? right. anyways, we will continue to monitor the swelling (forgot to mention last night that i also have swollen ankles but they aren't yet in full on kankle mode like they were when i was pregnant so i am super thankful for that). if something changes dramatically, i will of course let him know right away (i promise mom).

also on the list, we talked about the muscle aches i have which is common (reminds me a bit of my year spent on interferon when it hurt so bad to walk - not to that level yet), and how any joints that slightly ached before really ache now. he reminded me that the treatment can cause arthritis to come on, really hoping that doesn't kick in for me. but like with everything else, we shall see.

i am going to try a new drug to help with nausea, my current one makes me really drowsy so that is a no go on work days. so we will see if the new one helps me make it through monday - friday.

we talked a bit more about how the side effects are likely going to be rough(er) after this next dose, ugh. but i will just have to take it as it comes and see how i do. i would be lying to you if i said that june/july were going to be easy months. but are any months with cancer easy? i say no. so onward we go.

we talked about a port, i am still debating that one a little bit more. actually have been feeling so crappy i had not thought about it too much, but will think it through more after this next round of treatment.

after we left the appointment, i did my usual swing through the gift shop to see if they had any cool hats that i could not live without.

as you can see from the picture, that was a very successful mission.

happy thursday all -- i am so ready for friday to get here. i might crawl my way into it, but  i will make it. we can do this. look out friday, we are coming for you. (insert hand fist emoji here because i can't figure out how to do that on blogger;))

and so it goes

"and so it goes" is one of my favorite billy joel songs, but seemed fitting for this post as well.

i have a new side effect to add to the list as of monday morning.

swollen eyes, lips, and chin.

this is what my eyes looked this morning, as you can tell, the eyelids are basically entirely covering my eyes. and they seem to have decided to also swell about half way down my face. my eyelids feel like they weigh about 1,000 pounds each. man, my eyes are so tired by the end of the day. but on the good side, my actual vision has not changed which is a potential side effect and one that i have to watch closely. so while i can barely see, my eyesight is still good.

my lower lip is a lot bigger than my top lip, and my chin is swollen. perhaps like a botox incident gone wrong;)

yep, looking good in the morning and throughout the day. i promise that i won't show pictures of every side effect, but i figured that this is one that you can see and can get an idea about. and since we are going on this crazy ride together, you might as well see what i looked like before i propped my eyes open with toothpicks (kidding, kind of).

i walked into my boss's office today and he asked how it was going and i said "oh good, except that i am nauseas and my eyes weigh about 200 pounds each - other than, totally good." and i laughed. and he laughed. and he said "you know, i guess you can choose to laugh or not, and you always keep laughing."

yep, still laughing. what else am i going to do? lay in bed and feel sorry for myself and cry. yep, did a little crying last night to be honest and then quickly realized that crying was sure as hell not going to help my swollen eyes. sucks when even crying makes your side effects worse;)

so we will see what tomorrow holds. i have a check-in appointment with my oncologist so we will what he thinks about the swelling. i have been keeping him posted and have been ensuring that my breathing has been good as swelling of my throat is a concern.

happy wednesday peeps -- may it be a good one:)

weekender

friday was the best that i felt all weekend.

i made it all the way through the billy joel concert, nauseas but doable, and then during the encore the nausea came on like a freight train. but, oh billy --- he puts on such a good show. i would see him in concert every chance i can. so, so good. nothing like singing along with him at safeco field, with the roof open, on a gorgeous may night.

saturday morning i slept in late, i needed the rest. felt ok when i got up, not great, but thought the day might be bearable. about 1.5 hours later, while we were out getting some lunch, the tidal wave came rolling back in and i was down for the count for the next five hours. so, that was pretty much my saturday.

today i was up for the day although i needed to take quite a bit of deep breaths to keep chugging through the day.

i am getting worried that this nausea is going to be with me the whole way through, and even more worried that this is not as bad as it is going to get.

but i can only see how it goes when each day passes.

but for now, let's just assume everyday i am not feeling great because i will get tired of writing about it, and at the end of a long day of living with it, writing about it is just about the last thing that i want to do.

in between the nausea, we did get in some tickle fights, some movie time cozied up under blankets, making malena's cooking kit for the month which was donuts (which of course we made gluten free), time with the family, and of course i got in some green teas.

another week begins, i have no idea how this one will play out so the only option is to dive in. right? right.

here we go.

acceptance

today was a rough one.

i was really nauseas all day, and then it really came on like a massive tidal wave in the afternoon.

i had to leave work early to come home because i just couldn't take it any longer.

i had to go.

that was really hard for me.

i saw this video last night (which everyone of you should - in my humble opinion - take 10 minutes of your day to watch. like right now. it is that good. trust me. are you watching yet? have i ever been wrong before? i think we both know the answer to that).

acceptance.

it is a really hard one for me. i am trying day by day to work on it.

as i was driving home today, i thought about acceptance and how walking out of the office was such a major step for me. it was me saying to myself "you are too sick to be here right now. you need to go home and rest. this is your reality, whether you like it or not. so accept it and make the right choice for you."

but it was so damn hard. and i was angry. and i was sad. and a part of me was grieving because it felt like my fears were coming true the moment i walked out that door. i might not be able to work like i always have, and that is devastating and crushing for me.

i walked in the house, put my bags down, changed from my work clothes, and went straight to bed. i didn't get out until about 3 hours later when my awesome husband had some dinner for me to try and eat (in addition to being a really good blog poster as needed, he is a good cook too;)).

so now i am off to head back to bed and try to get some more rest. i hope when i wake up i feel a little better.

i hope your weekends are good ones. ours is going to include a billy joel concert for me (and come hell or high water i am making it through the entire show), sleeping in, camp outs, tickle fights, down time, dreaming about the new house, reading my happy mail, swim lessons, and some time with extended family.

enjoy your weekends peeps. make them good. do something fun. relax. eat your favorite ice cream. go to your favorite restaurant. get outside. play. smile. laugh. drink a cold cider (make it two since you will need to drink one for me;)). xoxo

saturday

"the wounds have changed me.

i am so soft with scars my skin breathes and beats stars."

(nayyirah waheed)

on saturday when we went to the melanoma symposium i knew that it was going to be rough.

it is every year to hear about the latest in treatments, patient stories (which can also be inspiring and bring hope), the latest research, etc.

but this year, when they were talking about the latest in treatment and statistics, they were talking about the exact treatment regime that i am on. it is hard to explain what it is like to hear doctors talk about statistics around treatment (like how many patients are alive at so many months after starting treatment) when you are one of those patients. it was very jarring. as hard as that was, i also take comfort that there are really smart doctors dedicating every single day to making advancements in melanoma research and working to find cures.

we also learned some stats that were new to us. washington has the 9th highest rate of melanoma within a state in the country (utah is number one). the puget sound area has the 4th highest concentration of melanoma in the country. one more time, 4th highest in the country. that is insane. there can be many reasons for that, one being that people who live here think that on the cloudy/rainy days they don't need to protect their skin. that is an incorrect assumption.

in 1930, one in 1500 people developed melanoma. this year, 1 in 50 people will develop melanoma. 1 in 50. if you think about that, within the group of people you work with/family/friends, 1 person will develop melanoma. since i am already in throws of it, i hope that i am the one person in all of your circles so that no one else i know or love has to go through this.

400,000 cases of cancer are linked directly to tanning beds. 6,000 of those cases are melanoma. even writing the words "tanning beds" makes me sick to my stomach (which technically should be "makes me even sicker to my stomach" since i am still so nauseas).

there will be 73,870 people diagnosed with melanoma in our country this year. there will be 9,940 deaths in our country this year due to melanoma.

i saw my friend deb at the seminar. she has been a stage iv patient for years, and melanoma just came back again in the fall for her too. she was on a treatment (one that is a drug i am on) and it was not successful for her and new tumors developed. she is now on a different treatment regime. i am continually sending her good vibes and love, and i took comfort that again we were both there. we were both there. but this is the first time we have both needed treatment since i met her.

the patient stories. 3 patients, all stage iv, got up and shared their stories. their fights. how they have been to hell and back and are still fighting. it is hard to hear those stories because honestly they scare the shit out of me, but it is also comforting to know that there are options to help with the fight. one woman talked about how in the years she has been fighting she has got to dance with her two sons at their weddings, celebrate grandkids birthdays, see a daughter graduate college, etc. i know how she feels. every milestone or holiday i have got since the day i was diagnosed i am so damn thankful for. every single one.

so today the nausea continued throughout the day. between that and the fatigue i felt like i got my ass kicked, and i guess that i did. but that means the drugs are doing their thing and that is good. clearly they are on the move and getting to work. so we will see if this becomes my new normal, i certainly hope not but i can only take it day by day and see how it goes.

there was a quote by churchill that was shared at the symposium.

"now this is not the end. it is not even the beginning of the end. but it is, perhaps, the end of the beginning."

i liked that one.

a lot.

here we go

just a quick update since i haven't wrote in a day or two.

the side effects, other than being tired, seem to be kicking in.

yesterday i had a couple of times at work where i could simply not find my words. i knew what i wanted to say, but i could not find the right words and i could not get them to come out my mouth. super frustrating.

then at about 5pm i started to feel really nauseas and that never went away. i was down for the count for the rest of the night.

still not feeling well this morning. hoping my nausea meds kick in here sooon for me to help me get through the day.

i will write more soon, hope your weeks are going well - it is hump day, we are half way there. i don't know about you, but i am more than ready for the weekend to get here.

xo