Monday, July 30, 2018

kicking off a new happy mail campaign for kelli and i hope you will join me

a couple of posts ago i wrote that while i was in the hospital the time before last, john finished his fight with melanoma stage iv and hung up his gloves for the last time.

john leaves behind family and friends, but also his wife kelli who describes herself now as "trying to navigate widowhood, my better half lives on through me." they were married last october.

it has now been over a month since john hung up his gloves and i know that some days are harder than hell due to the grief, and some days are a little easier. it swings day to day.

i asked kelli if a happy mail campaign may help as she moves through these months. she said yes.

so here we are.

this will be the first time we have a done a happy mail campaign for a widow of melanoma. i would like this campaign to let kelli know she has support from near and far and to just keep taking everything one step at a time (pretty much her current motto). 

if you have not heard of a happy mail campaign, we do them pretty often on the blog . the way it works is you tell me you would like to have a week assigned to send kelli happy mail. the week you are assigned, you just need to send her at least one piece of happy mail (a card, a postcard, etc.). if you want to send more, you are certainly welcome to. that way every week kelli gets something in the mail (other than bills and death paperwork) to let her know there is a whole army cheering her on from near and far.

if you would like to participate, email me/instagram me/facebook me/text me/leave a comment on the blog, rent a hot air balloon, whatever it takes --- and i will sync you up with my friend kristy who is helping to organize this campaign and will have all of kelli's likes and her address - and kristy will tell you which week you are assigned.

if you have any questions, please let me know.

gloves up.

let's make kelli's days a little brighter.

are you in?

Wednesday, July 25, 2018

next steps for me

i had my oncologist appointment today.

bloodwork looked good. 

today i went back on one of my treatment meds at a lower dose.

if that holds and i don't end up back in the hospital (let's all cross our fingers please) then in two weeks we will up the dose and potentially add the second drug i was on back into the mix.

i will have scans in the middle to end of august. it is too early to do them now because i have been on and off the treatment meds too much due to the hospital stays, and having to take the antibiotics and steroids in between all of that.

i am still on the antibiotics, i am off the steroids as of today (hallafreakinluah).

the rash is going away and the welts are pretty much gone - and that is a very good thing. trust me.

so that is the plan moving forward now. one day, one pill, one blood pressure check, one breath at a time.

i hope that you all had a good wednesday.

thanks for all of the love, prayers, and ongoing mojo.

maybe, just maybe, the tide will start to turn.

we can only hope.

gloves up. xoxoxoxo

Monday, July 23, 2018

jennifer and michael update

today was a day with good news.

things with jennifer are looking good.

she is still healing obviously, but the doctor said that it looks like the tumor has shrunk and is not as obvious in the scans. yes to that!!!!!!

her next scans will be in 3 months.

thanks for all of the love, prayers and mojo you sent their way for today.

clearly it all worked.

you guys are magic makers (i already knew that).

isn't it nice to have a day with some good news in it?

i think so.

happy tuesday friends. xoxoxo

send everything you have to seattle at 1 for michael and jennifer

jennifer and michael get her scan results today on whether her treatment is working to fight the cancer.

so this is your super duper important reminder to send your love, prayers, mojo, whatever good stuff you have got their way.

the appointment is at 1pm.

gloves up.

michael and jennifer - all the love i and this magic team behind me have (which is an incredible amount) is coming your way. 


Saturday, July 21, 2018

for jennifer and michael - start kicking up the vibes for monday please

jennifer and michael get her scan results on monday on whether her treatment is working to fight the cancer (which we know it will be, no other options will be considered).

so we all need to start sending our love, prayers, mojo, whatever good stuff you have got their way.

the appointment is on monday in seattle at 1pm.

i am sending this tonight so you get it on sunday and have a whole extra day to send the good stuff.

don't worry, i will send a reminder tomorrow too - you knew that was coming.

so let's work our magic for them.

go team.

gloves up.

michael and jennifer - this army is with you, and they are a powerful crowd so cancer is probably heading south on I-5 as I type this.

we are with you.

love you two to the moon and back (and then back again).


+++ quick personal update - the rash and welts across my body are in full effect still. the prednisone is taking its own sweet time kicking in. i better see progress tomorrow or all hell might break lose around here. stay tuned.

Friday, July 20, 2018

the last 24 hours + remembering judy

well kids, the last 24 hours have not been uneventful around here.

this morning i woke up with a rash and welts (that itch like you can't believe) all over my body. by noon my nurse had me go straight to the er again as they had spread across my face and we were worried my throat would start to close because my tongue was starting to swell.

evidence below of left arm. other parts were worse than this. i will spare you pictures. you are welcome.

so barrett and i again spent the better part of our day in the hospital. the irony after getting discharged yesterday afternoon. i finally got discharged today and the culprit was the antibiotics they started me on last night at home (sidenote: can i just say how happy it makes me when drugs they give me to cure infections give me infections?). in the hospital i was getting liquid meds through my port. the prescription for home was for capsules. apparently, my body just gave a big "hell no" to the capsules so we are trying another brand. i am now on antibiotics and my favorite - steroids - to deal with rash and swelling. good times, good times. can't wait to see the fun tomorrow brings.

did i mention cancer can suck it?

moving on to something dear to my heart and way more important than the above paragraphs...

when i was in the hospital this week, judy put down her cancer fighting gloves for the last time and went to heaven to be with her family that was there to greet her. judy told her daughter kris (my high school bf) that she was sad to leave her family here (two kids, her husband, six grandkids, etc.) but also knew she would see the family that had gone before her. judy and her family have a tremendous amount of faith, during one of the last days, kris told me it was like god was holding one hand to have her come with him, and they were holding her other to stay with them longer.
this is the two of them together. what a gorgeous picture of two gorgeous (inside and out) women who i have been lucky enough to have in my life longer than they haven't been.

they both have taught me so many lessons. 

judy welcomed me into her home with open arms when i was a kid and her house was like a second home to me growing up because i was there hanging out with kris all the time. i remember...her sitting on her porch reading or just looking at the lake from their porch, or reading her books in the front room, working outside in her garden, having girl chats with her and kris, seeing how much she loved wayne and the kids simply by the way her eyes lit up when they were all together, getting to eat her good food, getting to watch her dance with wayne at kris's wedding and at mine (and they were so smooth on the dancing floor everyone just kind of watched in amazement and could tell they were still head over heels in love after all the years that had gone by). but what i will always remember the most is that when i think of judy the first word i will always think of is love. she always made you feel loved.

in the last words she wrote on her caringbridge site, she said something that will stay with me forever. with kris's permission, i am sharing judy's words here:

"May ninth surgery.  I’m in ICU when pastor Brian comes to visit.  A very nice visit with words that allude to miracles.  When leaving he asked how he could pray for me.  I asked him to pray for a miracle; I still believe in them.  Well, after this week’s news I don't feel like the miracle so many of you have been praying for will come to be. 

But last Thursday I woke up after a vivid dream which was clear about one thing.  I’ve got my miracle. Looking back on my life I have experienced many miracles.
A wonderful wholesome family with my two sisters
A beautiful childhood home on a country street surrounded by many cousins, friends and church family
Marrying my best friend who is the love of my life
Two wonderful children in whom we are so proud and their wonderful spouses
Six precious grandchildren whom I love and whose love surrounds me every day
A warm comfortable home in a setting which nourishes my soul
And most of all, my beloved  friends.  They are all unique and I cherish them all.  My beautiful faithful friends who have walked this four year journey with us
Yes, I consider all these things to be my miracle.  I have been blessed with a miracle each day as I get out of bed and praise our Lord.  The water, the sky, my birds; all of our adventures.  Camping, traveling, sailing, living in Arizona.  Fellowship and prayer groups.  I’ve been given so many miracles."

i wrote something that i asked kris to read to judy. one of the parts was that as a fellow cancer fighter, i will never forget these words. you are always looking for the miracle, and sometimes it can be easy to forget the miracles you already have.

i thought it might be a good reminder for all of you too in whatever miracles you may be hoping for in life.

if you asked me, i would say that judy was one of the most special miracles i have ever met.

rest well judy, you made my life better and i will never forget you. and thank you for giving me a best friend that all these years later, i still have and get to laugh with, cry with, and watch as our kids and our selves move and grow up through life. she is the best gift you could have ever given me, a miracle in her own right.

i love you and like so, so many others - i will miss you but will carry you with me for all my days to come. 


Wednesday, July 18, 2018

She's over the hospital stays

As you can imagine we are all a little sick, which is a big understatement, of our time in the hospital.  On the good side of the update Alli is on a good trajectory with her blood work improving, her blood pressure staying higher, and some other symptoms improving.  They thought yesterday they were going to have to do a different type of echocardiogram of her heart to check for infection which meant no eating or drinking for 6 hours before and then having a tube stuck down her throat for the procedure.  After further consultation with the cardiologists and looking at her updated condition and bloodwork they decided that test was unnecessary on this time and as long as she keeps improving.  That is the good side.

The not so good side of the update is that we are likely in the hospital for a day or two more.  For her to be discharged her blood pressure needs to stay up on its own without her getting IV fluids, her fever needs to stay away, and she needs to have some other side effects of the infection on the right path.  We lost a day on the blood pressure part as for the heart test above she had to quit eating/ drinking and they had to keep her hydrated with IV fluids.  While that is good and what was needed that also meant there was no way to see if her blood pressure would stay up on its own without IV fluids.

So long story short, Alli's condition is improving which is the most important part; but unfortunately we likely have some more time in the hospital before she gets to go home.  And as you can see from the blog post, she is definitely over the stays in the hospital and being away from Malena and enjoying our life at home.

Alli also just got a great update from Beth.  She just got her scan results back; the scans were stable and the two largest tumors have shrunk some.

Let's hope the good news continues for all!

Tuesday, July 17, 2018

Return trip to hospital

Unfortunately Alli had to be admitted back into UW hospital late Sunday night.  She fainted a couple times on Sunday and started to run a fever.  Luckily when she fainted she was around someone both times that could help get her down without just falling to the ground hard.  They were able to confirm that she has a C-dif infection of her stomach which can be common after the antibiotic treatment she had from the hospital stay.  She has had the fever and some pretty bad chills while she has been in the hospital as well.  The doctors here have been talking with her oncologist we are holding off on her cancer treatment while we are in the hospital and until we see the oncologist (have an appointment scheduled for next Monday).  Her blood pressure had been staying up but is a little lower last night (not like the last hospital visit but a little lower than normal) so they want that to go back up and her fevers to stay away.  They have her on antibiotics targeted for this new infection so we are hoping they work fast so we can go home soon.  I know it is really hard on her to have another special day, her birthday today (the 17th), effected by another hospital visit so it would be nice to get home and get ready for some new memories with some upcoming getaways.


Saturday, July 14, 2018

the new drugs have started

i am now on day four of the new drugs.

they are cotellic and zelboraf. if you look anything up on the internet about them or how they affect patients, please don't tell me. i need to believe that these are going to shrink these damn tumors once and for all and i don't want to hear about other patients stories because i just need to focus on my own story.

between the two of them, i take 11 pills a day. add to that the pills that take for swelling, nausea, and my anxiety and i am at 15 pills a day.

the side effects of them include: nausea, diarrhea, severe reaction to the sun if my skin is not protected (blisters on my skin), skin rashes, fatigue, fevers, jaundice, joint pain, vision changes, can affect my liver which would likely show on my bloodwork before i would know my liver was having name a few of the most common...

i need to be very careful to stay clear of people who are sick due to my immune system on these drugs. if we fly, i have to wear a mask if we fly to protect myself from any germs and wipe down my seat and the tray. that will be great as people will think that they need to stay away from me when in fact it is me that needs to stay away from them.

so four days in, some of the side effects have kicked in - i will spare you the details. but i am hanging in there.

the recovery from the hospital continues on. getting sick and the stay in the hospital really took it out of me. i am surprised and frustrated by how long it is taking me to bounce back (and by bounce back i mean to the regular exhaustion levels before treatment). so as frustrated as i am, i am taking it day by day and sometimes hour by hour.

my mood has been pretty low key lately, i kind of feel like the character sadness in the movie "inside out". i am just tired (literally and figuratively). i am tired of being so exhausted and going on i-don't-know-how-long-anymore-of-feeling-like-shit. i am tired of feeling never caught up and always behind on life. i am tired of missing birthdays and anniversaries because the days on the calendar move by differently now, based on how i am feeling not based on my ability to plan ahead or track important dates at all it seems. that doesn't mean i am not picking up the boxing gloves. i am. it is just taking me a little longer this time to tie the laces on them. don't worry, i am not implying anything by that other than the truth. which is i am tired. and i think after all of this and the huge diagnoses and the losses that have come along the way for friends and loved ones. i deserve to be tired and that is ok. i am not going to pretend for myself or for anyone that things are any different than that, if i did, i wouldn't be telling you the real story and that doesn't do any of us any good now does it?

i have decided to take a couple of weeks off of work. i need time to rest, recover, and be with family. taking time off from work is really, really hard for me, i have rarely done it in the last 8 years unless i absolutely had to because i was recovering from surgery, in the hospital, or recovering from the hospital. for me mentally, being able to work always made me feel like i was in the fight (keeping my routine) and it was the one thing in my life I felt like i could control that cancer couldn't take from me or make me feel like i was drowning withclue what to do or say next. it has been a mental game for me and it has worked to help me keep going. but i now know i need the down time, and maybe i should have taken more along the way but i can't beat myself up about that now. what is done is done. i can only look ahead, and that is true for much more than work. a book "us against them" i am reading by fredrik backman (chris - you were right, makes it hard to do anything else but read), sums up how i feel about work probably better than i could with my own words, 

"when everything else is collapsing, you throw yourself into the only thing you know you can control, the only place you feel you know what you're doing. everything else hurts too much. so you go to work and hide there, the way mountain climbers dig holes in the snow when a storm hits."

so i will spend this week at work getting ready to be out for a couple of weeks.

on the medical front, scans will be in august sometime (date tbd) to see if these meds are working. we all know that they are kicking mine and the tumors asses, right? right.

well i am going to head to bed so my big brother doesn't get mad, he watches the time on these posts and i get texts if they are after ten. but maybe because it is a saturday he will give me an extra 30 minutes;)

please send your love and mojo to beth as her scans are coming up on tuesday to see how the chemo is working and i know that she will hear that it is.

please also continue to send all of your love and prayers to judy and her family as she in now in the good care of a hospice facility instead of at home as was originally planned.

thank you. i appreciate it and i know they do too. xo

Monday, July 9, 2018

long time, no write

sorry that it has been so long that I have written in this space. 

the weeks have gone fast.

things leading up to the hospital visit were quick. as I think that I may have wrote in blog posts around that time, I was having a lot of problems with side effects and I was only 8 days in.

on the 9th day (which was a Thursday), I had spiked a fever over 104 early in the day and had some of the worst chills I have ever had that night which then created another fever. we called the nurses line and they said to take aleve and if my fever didn't break I was going to need to go off the treatment drugs and likely to the ER.

at 2am, I went down to take my medication. my blood pressure must have been really low at that point because here is what I remember. I got my meds out. that is all I remember. what I must have also done after that was get some juice out. because there was juice all over the floor and the bottle was on the counter. at some point after getting the juice out, I completed passed out. I went down hard with my head and my lower back hitting the freezer drawer handle on our fridge. when I came to, I was soaked from falling right into the juice on the floor and I kept coming in and out of consciousness. when I was conscious, I was screaming for barrett and my mom (who was staying with us). in about the 4th round of coming to, barrett heard me and came racing down. we got me back to bed and called the nurses and they had said I would likely to go to the hospital early in the morning.

in the morning, I was in bed and felt like I was ok to just walk from our bed to the bathroom. I was wrong. at some point right as I was heading into the bathroom, I passed out again and went down without anything breaking my fall. this time the left side of my head took the blow when I went down straight against the bathroom wall. barrett and my mom heard my fall and came racing up, I only know that because they told me that. when I came to, they were both in the bathroom helping me and I kept going in and out again.

a call to the nurse confirmed I needed to go to the hospital asap.

I could not stop from recurrently passing out so barrett had to carry me to the car like a baby in his arms. when he put me in the car, I was passed out so when I came to I was scared because I didn't know where I was for a second but him and my mom were there to tell me that I was going to the hospital and that is why I was in the car.

I got the fastest check-in ever I think that the ER, not that I remember it because I was so out of it. 

when I checked into the ER, my blood pressure was at 51/18. not good.

that lead to being in the hospital from Friday - Thursday when I got released. a lot of that week was a blur to me of being moved three times in the first 24 hours, once from the ER and twice within the ICU. getting a needle entered into my port and lots of meds. a needle getting put into my arm that hurt so badly my entire body was locked with pain because the vein kept rolling on her so she couldn't get the needle in. being woke up every hour for blood pressure checks, meds, bathroom, etc.

I gained about 30 pounds within 24 hours from all the liquids and had a tremendous amount of swelling.

in the end, they could not determine if it was solely side effects from the meds I was on and/or an infection that caused all of the problems. regardless, I was off of my treatment meds and on antibiotics. I finished the antibiotics and I will start my new treatment drugs that we are going to try on Wednesday of this week. I am not going to go into all of the side effects of that those right now because I don't feel like it, so overwhelming.

what I can tell you about that weekend is that it was father's day (which we made up for the following week) and malena's last week of school  was when I was in the hospital and all of her final activities which can't be made up for. that was a really hard week emotionally for me to be in the hospital instead of with her at all of those final activities. I am not going to go into that much more because it was so hard and even writing this is hard for me. but she was my favorite visitor and came to give me smiles multiple times in the hospital (not that kids should ever have to do that in the first place).

also while I was in the hospital I got the news that John that I had wrote about in the blog (a fellow melanoma stage IV fighter) had laid down his fighting gloves for the last time. that was a tremendous blow. I would ask that you send him and his wife kelli, who is doing her best to keep putting one foot in front of the other ,your prayers and love. I could say more here about that, but I won't because frankly it is so close to home and though I had not met John and have not met Kelli yet (plan to), it was so devastating to get that news.

after I got home from the hospital, I also got the news that Judy (who I have wrote about on this blog many times and recently asked for your prayers as she went through a major surgery) had her tumor come back immediately after the surgery. Judy already knew from the doctor that there would be no more surgeries, so Judy is now home with hospice care with her family by her side. please send all of your thoughts and prayers to Judy, her husband Wayne, and their entire family including Kristina who I think that I might have literally been tied to in high school as it seemed we were never apart.

beth continues to take it day by day as she undergoes chemo and she has scans coming up to see how the chemo is working so get the good vibes going for her please.

and there has been some joy....

lisa got clear results on her latest tests last week as she recovers from breast cancer treatments so I am super thankful for that.

Kaylee's scans came back clear and she is cancer free! it does not get better than that. such good news for her.

and in this space, I have been quiet as I recover from getting so sick, that really took a toll and I have been fighting to get any energy back. I think that I could sleep all day but I am trying not to do that but mornings are hard and I am tired in the afternoons. I have not caught my sleep schedule all the way back to normal yet from being in the hospital when you sleep during the day and are all up all night long. ugh.

and in this space, I have been quiet as I haven't had the energy and I guess I don't really know what to say expect everything medically sucks and I hope that these new drugs work but I know they are going to kick my ass so I am up against the clock to prepare for that.

since going in the hospital, I have also had to give up some dreams. we had planned to go to france this summer, and I had been dreaming about it for most of a year I think and could see so clearly in my mind that picture of us in front of the Eiffel tower. but the timing is not right so we are letting that go for right now, not for ever, just for now. But I won't tell you that it isn't hard as I had looked forward to that for so long. so we are planning some other trips closer to home so I am close to home and my doctors as needed throughout the summer. and those trips will create special memories all to themselves, that my heart does know.

so this blog may be my first where there are lots of capitals, but I am not going to correct it. one because I don't have the time as I need to pick up my kiddo and two because I am just going to roll with it for today (that must give you a hint of how much energy I have).

I hope the last few weeks have been good to you all, sorry for the quiet in this space, it won't be quiet for so long next time. 

take good care. xoxo