Tuesday, January 31, 2017

your vibes worked their magic,keep it coming

well you all worked your magic today with the good vibes for mary.

she got the approval from her insurance to have her scan on friday.

yes to that!!

so now keep your vibes going for her scans on friday that they do not find melanoma anywhere other than the one area she knows of on her leg.

kim's pre-op appointment today went as well as it could have minus the needle pokes she endured.

she will check in for surgery at 8:45am tomorrow, so start kicking up the good vibes, prayers, mojo for the morning.

we expect it may be a night with not a lot of sleep around here tonight, so you could also send us all some sleep vibes for the next week too.

on another good note, i got the ok to use some cream today to try and help my joint aches which have got increasingly worse. my right arm, shoulder, and hip are not being cooperative with me in the last couple of weeks. so i am hoping that this cream is the magic i need to get some much needed pain relief.

thanks for all the support.

you have got this kim, you are a fighter and can do this. that i know for sure. we love you.


Monday, January 30, 2017

good vibes for mary + kim

my friend mary is waiting on her insurance to confirm that they are going to approve the scans that she needs to have to confirm if melanoma is anywhere else in her leg or her body. let me repeat, waiting on her insurance to confirm if they are going to approve. it makes me so angry that cancer patients (or anyone) have to wait for their insurance to confirm that they will approve the tests that will help to save their lives. so please send good thoughts her way that her insurance pulls through or i may need to fly out to wisconsin and kick some insurance ass myself. for real.

speaking of insurance, the issues that are happening at a national level around insurance make me so angry. and so scared. i could write a long, long post about that and probably will soon. the fact that insurance is at risk for so many people, and people who do have insurance may also become casualties of the politics makes me sick. as my bills roll in from the last month which are over $100,000, i can't tell you that i am not worried about what will happen going forward.

tomorrow kim has a pre-op appointment to do some dye testing to confirm which lymph nodes will need to removed during surgery on wednesday. she checks in at 2:45 tomorrow for that test so kick up the good vibes, prayers, and mojo at that time please. we don't know yet what time she will need to check in for surgery on wednesday. if you didn't catch up to it in my last post and would like to follow updates on kim, you can do so here.

thanks for all the good vibes for these two very important people.


Tuesday, January 24, 2017

no stitches this time

no biospies today.

my derm looked at and felt both lumps and did not think that they were melanoma. he thought that they were benign growths similar to ones i have had before.

of course he said that he would biopsy them if i wanted him to. my call.

but i totally trust him. and i know that if he thought that there was any chance that they were something, he would biopsy them.

so i decided to not biopsy them and if i notice any changes with them then we will do a biopsy.

as we were wrapping up, he told me as he does every time, that if i notice anything changing to call and he will get me in right away. like he always does.

i can't say enough how great it is to have a doctor that says that to you. and you know he really means it.

so onward we go.

happy wednesday peeps. the half way mark.


Monday, January 23, 2017

round 2 + lumps + good vibes for kim

bravery is rarely about doing something bold.
the most brave act is often a quiet, internal moment when we sit in great discomfort,
close our eyes,
and gently whisper,
'i will stay'
(laura mckowen)

my liver is on a serious good behavior streak and i appreciate that.

my liver levels are status quo and haven't moved at all. and that my friends is what i call magic.

i got a prescription today for the skin issue that i am having and we are hoping that some topical steroids on my skin will help do the trick. i have been having issues with my right arm being numb in the mornings when i wake up, and last night, it went numb during the middle of the night and hurt all night long (which translated into zero sleep for this kid). so i am hoping that it doesn't continue and that last night was an anomaly. my oncologist is not worried about it as long as it doesn't occur throughout the day, he thinks that maybe it is a localized joint issue from the treatment. so we shall see.

we were there for about 6.5 hours today which was short because i got called into infusion earlier than my start time so that was a nice little bonus on the day. as usual, i had great nurses to help me.

so i would like to say that was my only appointment for the week. but this weekend i found a small lump on my right side and one on my upper right leg. so tomorrow at 9am i go into my awesome dermatologist for him to take a look and determine if we need to do biopsies. so send my right side some good mojo until we see what happens. damn lumps and bumps. as my friend mary knows, any type of lump or bump when you are a melanoma patient sends you to your dermatologist asap.

i also wanted to ask for you to start kicking up your vibes, prayers, and mojo for my sister-in-law kim. next wednesday she is going in for her first surgery related to her breast cancer diagnosis in november. to help keep friends and family informed of how she is doing, i have started a caringbridge site for kim that i will keep updated to share updates as she kicks cancer's ass (up one side and down the other) this year. if you would like to follow her story, you can find more info here.

thank you for all of the mojo.

you all are the best.

in those moments when i close my eyes, that i know for sure. xo

Sunday, January 22, 2017

fingers crossed -- round two + good vibes for mary

monday is round 2 of treatment for me. if my liver cooperates with me. all fingers and toes crossed.

my cold is still kicking my you-know-what.

and the side effects continue on. dry skin which is painful at this point on my eyes/ears. little appetite. dry mouth. fatigue.

we check in early tomorrow at 7am for bloodwork so it will be an early and a long day.

so please send your good thoughts and mojo to my liver for the morning. we need it to cooperate with me again.

also, speaking of good thoughts, please also send them to my friend mary in wisconsin. i have wrote about mary many times before on the blog. mary found a lump this week on monday and got results on friday that melanoma is back in her leg. she is working to figure out what her next steps will be. so please send her all your prayers and good mojo because she is going to need it.

damn melanoma.

it makes me so angry and so sad.

cancer can suck it.

that is about all i have to say.

anywhere i fight, you fight.

round 2 here we come.

Tuesday, January 17, 2017

thank you liver

this was me this morning.

the cold is in full effect. and of course patients that have colds don't want to get other patients sick so we wear masks when we have a cold or the flu.

i just got my bloodwork back and liver levels were normal.

what a huge relief.

so treatment should be a go for next monday if my liver levels hold.

i am weary of the 2nd treatment jinx that came when we tried this earlier this year, so i remain optimistically cautious and will feel better if we can get through next monday with the all clear.

thanks for all of the good thoughts, love and mojo - my liver heard you and behaved itself today. xo

Monday, January 16, 2017


this one is going to be shorter than it normally would.

i have been fighting a cold the last couple of days, and late this afternoon, the cold won.

i feel miserable.

and my oncology nurses recommended not taking any over the counter meds today since i am having bloodwork in the morning.

bloodwork is at 8am, and then i should get a call with the results sometime tomorrow.

i am hoping beyond hope that my liver is doing ok.

i will be devastated if they tell me my liver is already starting to fail and i have to go off treatment.

so send your love, mojo, and vibes to my liver.

thank you.

anywhere i fight, you fight. xo

Sunday, January 8, 2017

where to go from here

"the beginning is perhaps more difficult than anything else,
but take heart, it will all turn out alright"
(vincent van gogh)

let's hope vincent knew what he was talking about.

wednesday was rough. i posted this picture on my instagram account and said "there are days in the fight with cancer that you don't get the worst news, but you don't get the news you so desperately wanted to hear. and you put down your boxing gloves and give yourself the time to be really sad. today is one of those days."

and i definitely felt like i needed to put those gloves down.

as i said in the post on wednesday, i am so thankful that the tumors have not grown and that there were no new tumors. that is definitely something to be super, super thankful for and i am.

but it was hard to hear that the tumors have not shrunk, if the treatment was going to shrink the tumors, we would have seen that happen by now. so what does that tell us? what is tells us is that the drug at best will maintain the tumors. as i noted in the previous post, my oncologist has had some patients on the drug that saw their tumors maintained for time lasting up to two to four years.

i do not normally like to talk about time unless i really need to know, and on wednesday, i wanted to make sure that i understood what my options were if doubling down on treatment didn't work for me.

there aren't other drugs that will work, i may be able to qualify for some clinical trials, but there is not another silver bullet.

so, by introducing the second drug (at a lower dose) back in, we are hoping (beyond hope) that my liver will not start to fail on me again and i can get multiple treatments in with the two drugs. the worst case scenario here is that my liver fails and i have to go off treatment and start steroids again, and then once i can, return to the drug i have been on and hope and pray the tumors don't grow. the best scenario here is that my liver works like a champ and i can stay on the treatment and the tumors shrink.

i am sure that you can guess which option i am rooting for.

it felt like it took everything i had to get through work on thursday and friday. i just wanted to be home. thursday afternoon i got really nauseas and felt crappy all night. friday the nausea was low grade but tolerable throughout the day. this weekend has been a little better with some smaller waves of nausea here and there. the other symptoms (dry mouth, dry skin, joint aches/pains) continue and the fatigue continues to mount. that isn't a surprise. i think that i could sleep 24/7 but there is too much life to live to do that.

if all goes according to plan, i will go four rounds of this double treatment plan and then we will do scans again. because i am on two drugs, we will do treatment every three weeks instead of every two weeks. i will do bloodwork on the 17th to make sure that my liver is holding its own. if we know at that point it isn't going well, i will go on steroids right away (and curl up in a ball for probably a good amount of time out of total devastation).

also on wednesday,  my friend beth was at scca for some further tests to see what the spots on her lungs may be (they are too small to biopsy). i will let beth tell you in her own words how wednesday was for her.

"Sorry it took my while to get this out, this is the first moment I have had to just sit.
The appointment did not go like I Had hoped.   I did the lung capacity test first and it showed some slight obstruction, meaning not breathing 100%.  But the test is weird.  It was quick too, if she had more time she said she would have given me an inhaler and tried it again. The cold weather could have been an issue today for me as well and of course I was running late!   Coming from a new home out of my routine throws me off a bit.  The test giver wasn't overly concerned with the results and no one asked me to take it again.
Then I met with the doctors.  They were a half hour late, a fellow showed up first and he was very scientific.  But said it was still inconclusive and all the other tests they could do right now they don't recommend because they would be invasive and probably not give us any good results.

Then I waited some more and the doctor came in.  It was a quick chat.  I said a summary of what me and the fellow talked about, except she said in her opinion it was metastatic cancer and not something fungal because I am low risk for that.  Well that is exactly what I didn't want to hear.  I know it is still her opinion and nothing can be truly concluded until they biopsy.  But still.  I think I would still rather have some weird infection or fungus than cancer.   There are other things it could be, but her opinion was that.  I asked some other questions which she didn't know how to answer so at that point I knew I would follow up with my oncologist.

I spoke briefly with my oncologist and he and I are meeting Friday morning.  One of the things I am confused about is how can it be cancer if the cancer wasn't in my lymph nodes and I was on chemo.  But it sounds like there are cells that "get away" from chemo.  But we will talk more and I will get my questions asked.
I am struggling with this because I didn't think this was to be my story.  I thought I did my year of cancer (even though it doesn't really get just a year of your life, the scars last forever).  But this know has me more spooked because it is sounding like this being cancer is much more a possibility. And I do not want to go through treatment again.   I do now want to get sick again.
I chose my word of the year a couple weeks ago.  to "be present" in the now because I cannot control the future.  So I need to work very hard to just enjoy the now.  I still feel fine, and scans likely won't happen until March.  The doctors today said I could still keep with the 6 months but will probably keep to 3 with the new recommendations.  So with how it's slow growing probably not much will change in the next 2 months.   But the word of the year will be hard for me. 
And I hope my oncologist can help me sort some things out this week.
I did go see Alli in infusion after my appointments.   Her news was not what we wanted.  The tumors have not grown, but they have not shrunk and that is disappointing.  Here are her words:

here are the results in a nutshell ---

the tumors have stayed essentially the same so i am going on the second drug starting today.

i will do bloodwork on the 17th to see if my liver is maintaining the drugs. if it is, i have my next treatment on the 23rd. if not, i go on steroids and all treatment stops.

once my liver rebounds, i would go back on the treatment i have been on which for some patients has maintained tumors for 2-4 years.

so i am thankful that the tumors have not grown, that is definitely good news.

i would be lying to say that i am not disappointed this treatment hasn't shrunk the tumors, and i am not looking forward to going on the second drug.

but that is where we are so that is what i will do.

thanks for all the love and good thoughts and mojo.

anywhere i fight, you fight.

and we definitely have more fighting to do.

I am not going to lie, we sat on that bed in her infusion room and cried for disappointment, and agreed to how much we hate this disease.    So please pray extra hard for her liver to take this drug because we all need some encouragement right now.
So those are my quick thoughts as I still process what I heard today and there will be more to come. 
Thank you for continuing to read my jornal and your ongoing love, support and prayers."

on friday, beth had an appointment with her oncologist to talk more about the information from wednesday and what he thoughts next steps would be. i went with beth to that doctor's appointment, and it was another appointment filled with tears and words we don't want to hear. here are her words about friday...

"Alli very graciously came with me today to my appointment and I am so thankful she did.   She is a good rock for me even in the midst of everything she is going through.  And I know either of us would be any place we needed to be for each other.  

And I now know why my oncologist wanted me there is person, because he didn't want me crying on the phone.  
First he says they don't know what it is.  They have no way of knowing what it is until they biopsy.   And he wouldn't guess.  It does look like metastatic rectal cancer but it also looks like a fungal infection.  
But if it is metastatic colorectal cancer it isn't curable.   They can give me chemo to maintain it but they never can kill it off.  It keeps coming back.  So that is the news that sent me crying.  I didn't see that coming.  I assumed I would just fight it again.  But really I would never get off chemo.   They could maybe do other treatments but same thing, it wouldn't help.   So that was quite shocking for me.   And he knew it would be.   

He answered my questions.  I told him I was angry and he gets that.    I still don't understand how it could be in two places and never in my lymph nodes if it is cancer.  But my oncologist really wants me to not go there yet. Because we don't know.  And the 3 of us in the room want it to be anything else but cancer.  As I know you all do as well.  

So he wants to be to keep living and doing the best I can to know this is out there but not consume me.  So i have to try really heard to be present and keep praying it is anything else but cancer.   My oncologist was really good with me today.  

I agreed to be in a clinical research project after my appointment on Wednesday.  It won't help me. But I want them to keep advancing research and diagnosis and treatments to help others.  They once again posted labs to my online chart and there was this odd comment about budding yeast seen in sample.  So my oncologist is chasing that down to see if it means anything. 

If I find out anything new I will let you all know.  Otherwise it is scans in march and then see where we are at.  I am super tired from the week. So I have decided to take my cancerversary off. No volunteering and just taking time for myself.  

So I have to hope I keep feeling good for the next few months so I can just keep living. 

So thank you for your love,  support and prayers for me.  For Alli. And for all those others with cancer that you know."

so as we sat in tears on wednesday and on friday at scca, there were many times that i wondered how in the hell we both ended up there as patients. but it is the reality and so we try our best to put one foot in front of the other. but it is really shitty, there is no doubt about that. and unfair, so damn unfair (not that cancer is fair to anyone).

so here we are, another week begins. i hope that you all had a great weekend, and played in the snow if you got some.

i hope your mondays are good ones.

thanks for all of the love, it is so appreciated. xoxo

Wednesday, January 4, 2017


here are the results in a nutshell ---

the tumors have stayed essentially the same so i am going on the second drug starting today.

i will do bloodwork on the 17th to see if my liver is maintaining the drugs. if it is, i have my next treatment on the 23rd. if not, i go on steroids and all treatment stops.

once my liver rebounds, i would go back on the treatment i have been on which for some patients has maintained tumors for 2-4 years.

so i am thankful that the tumors have not grown, that is definitely good news.

i would be lying to say that i am not disappointed this treatment hasn't shrunk the tumors, and i am not looking forward to going on the second drug.

but that is where we are so that is what i will do.

thanks for all the love and good thoughts and mojo.

anywhere i fight, you fight.

and we definitely have more fighting to do.

Tuesday, January 3, 2017

the wait is almost over----

wednesday is results day.

and infusion day.

i will go in for the bloodwork to be taken through my port at 9am.

we meet with my oncologist at 10am to get the results.

i check in for infusion at 11am.

this could go one of three ways.

good scenario: the tumors have shrunk and i stay on my current treatment plan.

shitty scenario: the tumors have not shrunk and i have to double down on treatment.

really shitty scenario: the tumors have grown and i have to double down on treatment.

my oncologist has me lined up to take infusions of both treatments tomorrow if i have to. he did that so that if we got the results and they indicated i had to start the second treatment, i would already be scheduled to get the second infusion.

as you can probably anticipate, i have about one million emotions going on.

i hope that the treatment has been working, that the 8 infusions and the last couple of months have worked. i do not want to hear that this treatment isn't helping me.

i am also scared to go on the second treatment because last time (though this time will be at a lower dose) my liver started to fail and i had to go off treatment entirely and onto steroids. if my liver does that again, treatment is off. and this time, we would know these two treatments aren't going to work for me. these are the realities that i know exist and that i might have to (but hopefully don't) face.

i woke up at 2:30am last night and could not get back to sleep. by the time i started to actually get tired, my alarm was going off. figures. but i don't expect to have much sleep tonight either. no surprises there.

my friend beth is going into scca tomorrow too for appointments to follow up on the spots on her lung. so we will cross paths likely at some point, and we consider being there at the same time good luck so hopefully we are right this time too. please send her good thoughts and love and mojo as they continue to work with her to determine what those spots may be (we know they aren't cancer, right? right. but they can't biopsy them yet because they aren't large enough so she is working with them on some other tests). thanks for sending her the love. i know that she really appreciates it.

as always, thanks for all the love that you send to me.

i will carry it with me throughout the day tomorrow.

i will post an update here as soon as i get the chance.

thanks for coming along on this ride.

it continues to be one hell of a rollercoaster. that is for sure.

anywhere i fight, you fight.

here we go, hang on tight. xo

ps) love this post from my friend liz about her word for 2017 -- attention. great choice.

Monday, January 2, 2017

and so it begins...

"may your coming year be filled with magic and dreams & good madness.
i hope you read some fine books, and kiss someone who thinks you're wonderful.
and don't forget to make some art - write or draw or live as only you can.
and i hope, somewhere in the next year, you surprise yourself."
(neil gaiman)

 well 2017 is off and running.

we rang in the new year with family and friends, and i barely made it to midnight. but we did make it to watch the ball drop and then crashed out. it was a good night and a fun way to say goodbye to 2016 and hello to 2017. that sign behind me says "we were together i forget the rest". so true, so true.

the next morning barrett and my nephew and i headed to seattle (and it was cooooooooold) to do a 5k run and a polar plunge (yep, all the way in) in lake washington. the lake was so cold, but like the last two years, it was a good way to start the year. i was happy that my legs cooperated with me and i could run it although i am definitely feel sore today. but the aches are worth it.

we have lucked out and had blue sky days for the runs each year, and i think that that it is a great way to start off the year. everyone is super friendly. strangers saying "happy new year" to each other. smiles everywhere you look. people high-fiving strangers as they run by them.

if you ask me, anytime you have strangers together and get smiles, high fives, and told to have a happy new year - i consider that to be a little magic (and don't worry, i won't use the word magic in every blog post this year. just maybe all but one;)).

i hope that your year is off to a great start.

let's do this 2017.