Where we go from here

I think I've tried starting this blog about 5 different ways.  Maybe its just the realization that I'm having to write it that makes none of them read like they should.  As Alli and I had said to each other before, this wasn't supposed to be our story but it is our story.    

Alli's sodium levels have been stable enough that yesterday afternoon she no longer was deemed an ICU patient and today we were moved to a different floor in the general oncology area.  Their best idea is that the seizures that Alli had triggered her brain to release a hormone that made her kidneys retain water when they shouldn't have been.  As they retained more water she became more diluted, dropping her sodium levels lower and lower very rapidly.  With a second anti-seizure medication she has not had any more seizures and she seems to be able to keep her sodium levels elevated where they should be. 

While I'm sure the sodium contributed to the responsiveness over the weekend it was not the only factor to her mental and physical state right now.  Since Christmas Eve Alli has had some okay times and some not so good times.  In the okay times she can have a little interaction for a couple minutes at a time.  Her speech is still slurred and she struggles to find words or remember part of the conversation but it is so beautiful to hear her voice and hear "I love you" one more time.  The not so good times she really has a hard time staying awake, isn't responsive, and has some restlessness and delirium.  Regardless you always see moments where you can see it in her eyes that she knows exactly what she wants to say but her body just doesn't want to listen to actually do it.  

Each day and hour seem to be different and oscillate between those states.  Yesterday was a better day with more interactions and getting out of bed for the first time in almost a week.  Today was not quite as good of a day with a lot of sleeping, very little interaction with others, and seemingly more headaches and nausea.

With the sodium issue figured out we needed to work through what to do about radiation with her oncologist and the radiation oncologist.  No one could say they foresaw enough chance of a benefit from completing the radiation that it outweighed the risk that it would make Alli's condition regress to more pain, nausea, vomiting, and delirium.  With that the doctors and I made the final decision to not move forward with the radiation.  It was something I had discussed with the family yesterday but it was part of the hardest decisions I've had to make.  

With no other treatments available and Alli not being in a mental or physical state to travel to a clinical trial in Texas we have started worked with palliative care on a care plan for outside the hospital.  With the full time care that Alli needs for meds and physical support we are looking at different in-patient care/ hospice options that are close to our home.  In addition to Alli's care needs, I made the decision based on what I think will be the best option for Malena in the future.  When Malena and I had talked before we had talked about what could happen if Mom didn't get better.  I never wanted to take away from all of the great memories we all had in our house; the laughter, the fun, the love we all shared together.  I don't want those replaced or diminished with memories of nurses, hospital beds, medical beeps, alarms, etc with Mom and our house.  

I'm not quite sure how we are going to get through the coming months but I know we will and I know it will involve the support of all of you.  It has the last couple weeks as well as the last 8.5 years we have been fighting this terrible disease.  Wherever we fight you fight.  

Christmas

Merry Christmas to all and to all a good night.

 

Monday Update

Last night was another rough night but hopefully one that ends today with Alli regaining more of her responsiveness.  I went to sleep just after posting the blog and was hoping for a peaceful sleep for both of us.  We didn't get that wish as the doctors woke me up at 3am and said that the most recent labs had shown Alli's sodium levels to have dropped a lot from the previous day and that they were having to move her to the ICU where they can provide the drugs and monitoring for patients that have that low of sodium.  Not the wake up call we were wanting.    

After moving her to ICU they started her on some meds to slowly raise her sodium levels back up.  As her sodium levels have increase so has her responsiveness to everyone.  I heard her say her first word in over 2 days at about 6am when she responded to a question from the ICU nurse.  It was just a single word and was slurred but it was so nice to hear her voice again.  As the day has progressed she has gotten more responsive to answering questions for the nurses and being able to have short interactions with people.  Her speech is very slurred and she is searching for her words a lot but so much improved from the previous 2 days.  Her team of doctors is now also every growing as she now has the ICU oncology team, the general oncology team, the radiation oncology team, the neurology team, and the nephrology team all consulting on her care.  

Today also ends with more questions but not a lot of more answers.  I think it is apparent that the sodium levels were contributing to her responsiveness.  The reasons why her sodium level dropped so fast and how much her responsiveness will continue to improve remain a wait and see.  With the focus today being on improving her sodium levels they also cancelled her radiation treatments for the foreseeable future.  If and when we restart the radiation gets added to the list of unanswered questions at this time.  As I said yesterday it seems like for every answer we get, a new question or two appears.  

But for this day I am going to focus on one answer we got today... that she is being more responsive and can have a short conversation.  That is one of the best Christmas presents I could have ever wished for.  I don't know what answers tomorrow and the next day and the day after that may bring but we will cross those bridges when we get to them.  

On this Christmas Eve night Alli, Malena, and I would like to wish everyone a wonderful holidays filled with love, laughter, and joy.  

Alli Sunday Update

This is going to be a fairly short update tonight as its late and in reality it seems like every day ends with as many if not more unknowns that it started with.  What we do know now is that Alli actually had 10 seizures during the 16 or so hours they were doing the continuous EEG testing last night and into this morning.  The seizure activity in her brain was not from her entire brain, but one specific section every time. From that they added a second anti-seizure medication to her ever growing daily medication list.  

Alli has also not really been responsive over the last 36 hours.  The doctors know the different possibilities as to why that is but unfortunately there isn't a test or scan or anything to say right now it is because of this single reason.  The only definitive answer is that time will reveal what the answer was.  My engineer brain understands that but also really doesn't understand that.  I know what they are saying is rational but it has just been engrained in my mind that there is an answer to every problem.  Plug the information into an equation and out pops the correct answer.   I just wish I knew what that magic equation is for this problem.

We will talk with the doctors tomorrow morning and make a decision on if we move forward with the radiation tomorrow and there after and assess how these new medications are working.  More to come.

Wherever she fights you fight.

Family update and thank you

Alli would probably definitely get mad at me if I only wrote about her while I am in control of this blog and we all know I don't want her mad at me when we get home.  At a work meeting we were in together Alli once dropped the line "Mr. Hanson should listen to Mrs. Hanson". I may not have listened that time but I'm listening this time.  

As important as it is to both Alli and I to be open and honest with Malena about everything it has been equally, if not more, important to always keep things as “normal” as we can for her.  With all the tough conversations these last two weeks have required it has been wonderful that Malena has been able to have play dates with her best friend Tori and do many of our annual traditions for this time of year.    

Those traditions included decorating a gingerbread house Tuesday when Alli got home and going to Snowflake Lane last night.  Snowflake Lane was bittersweet for all of us.  There were a couple of sad moments as you would expect but there were also so many smiles and laughs throughout the night with the Estrada’s.  The telling the jokes, laughing at something silly that was said, including Malena tossing out the idea that since the “snow” is soap that being there should count as her shower, the just being a kid and a family.  Cancer wasn’t going to stop there being some fun for all of us in that moment.

On that note, I also want to thank everyone for all the generosity and messages that we have gotten.  From the happy mail to the text messages, from the dinners to the GoFundMe page, and of course the amazing lip sync video.  They have all been received with appreciation, laughter, tears, and joy, many all at the same time, from the entire family.  You all have truly epitomized and brought to life her saying “wherever she fights, you fight” and we couldn’t do it without all of you.  I may not get to replying to every text and my better half has the card making skills I don’t possess but the outreach and support has meant the world to me.  I want to end this blog with a heartfelt thank you. 

Hospital Update

Last night (Friday night) was not a good night.  At 3:30am Alli had a seizure that lasted about 10 minutes.  She was feeling nauseous and the nurse and I had just sat her up when she started to have the seizure.  Her body straightened out as her muscles locked up.

She was essentially non-responsive for the next 3.5 hours until she started opening her eyes again about 7am.  She has been opening her eyes off and on since then but is mumbling what words she does try and speak.  They had scheduled a special Saturday radiation (normally its just Monday thru Friday) to make up for the one that she missed on Thursday to try and keep her on schedule and get through what we hope are the side effects as fast as we can.  They took her down for the radiation treatment this morning but because of the seizure she isn't cognitive enough to lay still and not grab her head where the radiation is going.  They had to call off the treatment because it just wasn't safe for her to be grabbing at her head while they are sending radiation to her brain.

We are waiting to talk with the neurology team today to get a little more info about the plan moving forward for treating the seizures and why she had a seizure last night.  For her radiation we will talk with the radiation oncologist on Monday to see if we end it at 8 doses of radiation (don't do the radiation on Monday), 9 doses (do radiation on Monday and then stop), or if extend it to have a treatment on Christmas day or the day after to get the full 10 doses.

Need a few more prayers that she can recover from these last two seizures and the symptoms she has been having start going away as we take a break from radiation.

Where ever she fights you fight!

Back to the hospital again

Our time staying at home unfortunately ended again as Alli had to be re-admitted to the hospital late Thursday night.  After the rough night at home on Tuesday night, Wednesday night was actually a little better.  Alli tossed and turned all night so it wasn't great but she wasn't woken up by headaches or nausea.  We got her up for breakfast and her first set of morning pills and she had a mild headache and a little nausea as she ate a little breakfast.  She rested for about another hour then she had her second set of morning pills and started to get ready to head to her radiation appointment in the morning.  As she was getting ready she started to feel worse and worse with nausea and a headache followed by vomiting every half hour or so.  

After an hour of not getting any better we headed into UW and after seeing the radiation oncologist we headed to the ER instead of getting her radiation.  The initial set of brain scans didn't show any new findings and no acute bleeding in the brain which was good.  Her nausea and headaches weren't getting any better and then she had a seizure for a few long minutes while in the ER room.  Between the seizure and the medicine they gave her just after the seizure she was stable but essentially non-responsive for about 3 hours before they were able to get her to open her eyes by squeezing her finger.  The next 4 hours were monitoring her in the ER as they determined whether she was going to be admitted to the oncology unit or into the ICU.    

So about 1am on Friday they admitted here to the general oncology unit.  She is a little more responsive now but still has consistent headaches and nausea they are trying to control as best as they can.  We haven't seen the doctors yet this morning to know what we think the next steps will be and if we think this is progression now or side effects of the radiation.  She did seem to get worse as the week went by with the radiation going on during the week.  She has had 7 of the 10 planned treatments so not sure if we will try and continue with her being inpatient or if we will stop.  More to come.

Where ever she fights you fight! 

Home from the hospital

Hospital stay #2 ended on Tuesday afternoon after her radiation appointment.  It was great to be home and Malena was super excited to have Mom and Dad back home.  Our first night at home was a rough night as Alli woke up at 3:00am with an excruciating headache.  With her symptoms getting slightly worse again over the last two days there is more thought that the symptoms that triggered the second hospital visit may have been more related to potential radiation side effects.  She has completed 7 of the 10 treatments completed so the plan is to try and push through with the last 3 treatments.  We are going to step up some of the pain and nausea meds on a routine schedule to go with the higher dose of steroids she is on.  Here's hoping tonight goes a little better for Alli.  

Hospital Update - Day 3

Alli had a really good afternoon yesterday.  She still had some speech and short term memory issues but she was awake and alert for over 6 hours, the most she has been in probably a couple weeks. She was also alert and with it enough that they let her start eating food again which is another great step.

In talking with the doctors this morning at rounds the plan is to keep going with the planned radiation treatments, including today.   While she is on radiation they are also going to leave her on the higher dose of steroids to hopefully offset any issues from the radiation.  A couple of the early bacterial infection cultures came back negative for an infection so they are giving them one more day before saying it wasn't an bacterial infection.  The viral infection tests are still pending.

On some better news if she can keep improving as she as been then they think the goal would be to be discharged tomorrow (Tuesday) after her radiation treatment appointment.  I know a certain 10 year old that would be ecstatic to have her mom back at home so we are focusing on that right now!

Hospital Day 2

Quick update on Alli. 

She is better this morning as she has been talking for a couple short stints but is still sleeping the vast majority of time.  When she is talking she still has very little short term memory and is struggling to find her words a lot.  You can see in her eyes the frustration that she know exactly what she wants to say but that her mind just can't figure out how to get her mouth to say it.  

They have been giving her a bunch of different medicines as they don't know what caused the symptoms to come back.   They are giving her different short acting and long acting antibiotics, a much bigger dose of steroids, and a bigger dose of the anti-seizure medicines.  They have the test back for one specific infection that was negative and are waiting for the cultures on a coupe other infection tests.  If those come back negative they unfortunately don't have a test to say if this was a side effect of the radiation, disease progression in the brain, or some combination.  Absent any infection finding, the radiation oncologist recommends that we keep going with the radiation tomorrow (Monday).  Melanoma does not usually immediate react to radiation so the hope/ conjecture would be that if this was progression that this would be the delayed reaction to the radiation. Therefore it would be better to keep going and hope the radiation starts working soon.

Wherever she fights you fight!

Back to the hospital

Alli is back in ER (on Saturday) and being admitted to hospital.  She got sick a couple times during the night then got really delirious at about 6am and still is delirious (about noon). They took a CT scan and it looked the same as last week. They cannot tell right now if the deliriousness was caused by disease progression, side effects from swelling of the brain from the radiation, or another infection that is being amplified by her brain metastasis.

Heartbreak

We have never hidden anything from Malena since she has gotten old enough to "understand" what was going on with Alli.  I put quotes because I don't think I am old enough to "understand" what is going on now and I'm 40.

Since the doctors told us on Tuesday there had not been a good chance to talk with Malena about their prognosis but I did tell her tonight as I would never want her to hear it from anyone but us.  To know you are going to break the heart of your daughter into a million pieces and tell her that mom is fighting like hell to beat the odds but you can't promise that she will is the hardest conversation I hope I ever have to have.  I might forever question if I did it in the right way; did I say it too strong, not strong enough, did I say too much, not enough, could I have used different words... heartbreak

Alli completed her third radiation treatment today.  She has been sleeping a lot since we have got home on Tuesday night, probably 20+ hours a day.  Her nausea and headaches are still there but, knock on wood, they has been more on the mild side.  She was able to awake for a little more tonight which allowed us to have a little family night watching the first episode of Top Chef on DVR.  For a few moments it felt like what normal used to feel like.

More to come later.  Wherever we fight, you fight!

-Barrett

Important Alli Update

I wanted to give all of you an update on what has been going on with us over the last couple days.  As Alli has always said, wherever she fights, you fight; though this has will be the toughest blog for me to write.

Alli was admitted to the hospital on Friday night.  She got very, very nauseous near the end of the day at work so I started to drive her home.  In addition to getting sick on the way home she also started to not recognize where we were even though we have driven that stretch of road countless number of times.  As we started to head to the UW ER department Alli started to get more delirious. 

Starting that night and over the following days they did numerous different scans of her brain and her chest.  The scans show that the melanoma spread to Alli’s brain cavity, spinal fluid, and around her spine.  They believe that the melanoma may have disrupted the flow of fluid in her head and irritated the brain that has been causing her nausea, headaches, and may have caused a seizure that led to the deliriousness.  She has also been experiencing challenges in her short term memory where most things don’t stick in her memory.  So remembering conversations, if she saw a doctor, etc are very hard for her right now. 

Alli started radiation therapy on her brain yesterday.  She will have it every weekday for the next two week, with the last scheduled treatment on Christmas Eve.  The hope for the treatment isn’t that it will kill all the cancer but that it will reduce the symptoms she has been having lately so she is more comfortable.  After finishing up the radiation the plan is for her to go back on an immunotherapy drug, a different brand than what she was on previously, with infusions every three weeks.     

Now for the hardest part… Given how her melanoma has reacted to all the previous treatments they think there is a slim chance that it will stop or push back the melanoma.  Their primary hope is to slow down the cancer.  There is never an exact science to this and people beat the odds and prove them wrong but they think it could be that she has just a couple months left.  As most of you know Alli is a very determined woman and is doing everything in her power to beat the odds.  We need a few more prayers as she picks up her boxing gloves again for her and the treatments to beat the odds. 

F*ck cancer.  Wherever she fights, you fight

Barrett

long time, no blog

+++ as always, didn’t intend to step away from the blog. but it happened. the truth is that i used to write blogs at night after malena went to sleep. i now to go the sleep at the same time she does usually because i am so tired so i haven’t carved out the pocket of time for the blog yet. need to work on that.

+++ i am on the second med now (so taking two treatment drugs now along with my anxiety meds and various others). i had a checkup yesterday and bloodwork looked good. i have been having a lot of pain on my left side so i had an ekg and a x-ray. no indications of tumors or lesions so i must have just really pulled a muscle somehow. so that was good news and hopefully the pain lessens over the coming weeks. i will go back in about two weeks for another checkup and then scans will occur after the holidays.

+++ my hair continues to fall out and am getting bald spots. i have been wearing hats pretty much every day because it is emotionally hard to see my hair fall out during the day and so hats give me a break from that for a few hours at least.

+++ i am really fatigued and tired. some days are worse than others. but i am just so tired, hence the going to bed at the same time that my 9 year old daughter does. zzzzzzzzzzzzzz.

+++ the joint pain continues on and i am trying to keep that under control through a combo of advil and tylenol. i feel like those are currently my go to’s between my joint pain and the pain i have on my left side that takes my breath away sometimes when i move.

+++ i have had to cancel out on plans many times because of how i am feeling. and i hate that.

+++ i celebrated michael and jennifer getting the best news possible – she went in for scans and they found no signs of cancer. it does not get any better than that my friends. the best news ever. and that is an understatement.

+++ i am rooting for my friend mary in wisconsin as she has started her cancer treatments, and she too is feeling serious fatigue. but like the fighter she is, she is hanging in there like a champ.

+++ i got the chance to meet kelli (that we are doing the happy mail campaign for) in person for the first time and that was great. i wish we were meeting under different circumstances. she rocks as i expected she would and we chatted at starbucks for like 2 hours straight like we had done that a million times before. i am looking forward to doing that again soon. if you are on instagram, you should be following her (let me know if you need her handle). you will laugh and you will cry – and you will cheer her on for being so damn brutally honest about being a young widow and the grief. oh, the grief – the topic that is so hard for people to talk about but it is the one topic those dealing with it need to talk about the most – next to talking about the people they lost.

+++ i am still cheering on my friend lisa that we did a happy mail campaign for as she continues to heal and deal with the after effects of her surgeries for breast cancer.

+++ i am still so proud of my sister-in-law kim for walking 60 miles for breast cancer in september and will be using her for inspiration to train for our annual 5k run and polar plunge on new year’s day. i have kelli talked into the run and plunge too this year, and she is doing a fundraiser for melanoma research foundation – and if she earns enough – she will do the plunge and let it get videotaped. you know i will be sending out more information on that soon.

+++ my anxiety has seemed to be increasing, and it comes along with this voice that tells me i am doing a crappy job at work, at being a wife, at being a friend, at being a mom, at being…the list goes on and on. it is interesting how anxiety grabs hold and tells you stories after stories and you start to pretty much wholeheartedly believe them. i am trying hard not to, but that voice is hard to overcome. i am going to try to increase my anxiety meds to calm the voices because they are getting louder and louder. i share that because i don’t think that we talk about anxiety enough in this society, and for some reason it seems like this dirty little secret you aren’t supposed to talk about but learn to life with. at this point, i need my meds or i don’t think i would be able to get out of bed many days. so knowing when i need more help is ok, for me, not asking for the help isn’t because i never want to go through what i did last year when i had the massive panic attacks that i didn’t think that i was going to find my way through.

+++ i officially have what i call “treatment brain”. i often can’t remember where i parked. i spent probably 10 minutes looking for my car in the safeway parking lot on monday night and i wasn’t in the store that long. more days then not i can’t remember where i parked at work. i can’t remember words that i want to say. i can’t remember names. i forget simple things. like tonight at dinner the bill came, and then i went to sign it and there was only one piece of paper and no pen. and i was clearly confused. then my friend kindly reminded me i hadn’t even put my card down to pay yet. ugh. the brain gets all muddled up with the drugs, that is for sure.

+++ i have headaches almost every day and i never have headaches. they are not enjoyable. my empathy to all of you that suffer from headaches and migraines. i always knew it had to be miserable, now i feel your pain. it feels like my whole head is about to implode, and i get the worst of it in the back of my head.

+++ i am wondering how in the hell is it almost thanksgiving. seriously.

+++ i am excited about all of the things that i want to do in november/december that are fun and things we only get to do this time of year. holding on to old traditions, and embracing new ones.

+++ i am missing reading. a lot. i haven’t found the time for that after i had to quit going to the sauna a couple of times a week due to my meds. somehow need to find that time back. i so miss turning those pages (i am a hardback book girl).

+++ i saw “a star is born” – if you haven’t, you must. enough said. i may or may not have sang the soundtrack out loud with my sister this last weekend when we had a road trip home. she sang too by the way and we pretty much rock as a duo. we may have also listened to some kenny rogers. we may have used our thumbs as microphones. you’ve got to know when to hold them….

+++ i have been watching my girl swim, cheer, do gymnastics, hearing her at the end of choir, and loving all of it (maybe a little less when it is outside and cold and/or rainy).

+++ i am wondering how it is possible that my girl will turn 10 next week. can’t process that one at all. but i can definitely process that my husband will turn 40 this weekend and will finally again be in the same decade as me. yes to that!

+++ i have found that my taste buds have changed and some things sound good, some do not. and it can change day by day and hour by hour which makes it especially fun annoying to try and plan meals for the week or even the day.

+++ i have really wanted to win the mega-millions. really bad. like, really, really bad. but so far, that hasn’t happened yet. dammit.

+++ i am overjoyed that my friend beth (yes, the beth we all root and cheer for on this blog) is getting married on saturday. i can't say in words how happy i am for her and her awesome fiancé lars. bring on the kleenex because i will definitely be needing them. probably two boxes. all to myself. just to get through the ceremony. two more for the reception.

+++ i have become 100% convinced that my slippers make my life better. if i could wear them 24/7, i so would.

+++ i have already started my christmas shopping as i refuse to be frantic the week before the holiday. ok, i probably will be anyways (thanks anxiety) but at least i won’t need to buy all the presents that week. go me.

+++ i hope that you all have a good thursday. we are almost creeping over the finish line.

+++ xoxo

results

the tumors have remained the same size, would have loved some shrinking but happy with them maintaining for now. adding a second drug back in now and then come back in a month for check-in. scans again in two months assuming no problems. keep sending the love❤️

scan day, yep - it's that time again

first off, thanks again to everyone who contributed to kelli's fundraiser for the melanoma research foundation in john's name. the total was over $850, you all rock (i already knew that). the winner of the gorgeous cards from my friend jill was my mother-in-law jo who was super excited to get them! thank you all, mission accomplished and you made a difference for kelli and she was so excited to see that total climb.

friday is scan day for me.

i go in at 3:30 and have a ct scan first.

then bloodwork.

then a 45 minute mri. i can hear the jackhammer noise now.

we get the results on monday morning at 8:30.

so start sending all the mojo, prayers and love our way.

gloves up.

anywhere i fight, you fight.

here we go. xo

thank you

such a huge thank you to all who contributed to the text for fundraiser for kelli's birthday.

you all rock.

we did it! we got her to her $500 mark and beyond to $780!

thank you, thank you, thank you - i knew that we could do it, and of course, we did. 

i want to make sure that i have all the names for the card giveaway and for the total for kelli.

so if you donated and didn't let me know, please let me know on monday so that i can do the card giveaway and give kelli the final number if it changes.

and please send her your love for monday as she moves through the day that would have marked their one year wedding anniversary. i can only imagine she can use every good thing we can send her way to find her way through the day.

thank you. xoxo

kelli's birthday + fundraiser for her birthday (please donate!) + card giveaway

this is kelli and john.

kelli is the awesome person that we are currently doing the happy mail campaign for as she grieves the loss of john to melanoma.

today, saturday, is her birthday. and this coming monday would have marked their one year wedding anniversary.

kelli has a request for her birthday.

to raise $500 for the melanoma research foundation.

she is currently $345 of the way there.

let's get her to $500 and make her birthday request come true.

it will raise funds for an organization that is working to find a cure for melanoma. clearly, it is a birthday request i can support.

i will be making my donation now.

if you donate, please let me know so that i can let kelli know how her total is growing.

to donate, you can go here.

also, for an additional incentive, my super talented friend jill gifted me some of her handmade cards that she paints and they are gorgeous. she told me to give them away as a giveaway on the blog, and i know that she would think that this is probably the best reason of all. if you donate for kelli's birthday, i will enter you into a giveaway to win the cards from jill.

i think that a donation for a woman who loved her husband more than we all could ever know deserves some love in return. am i right? yes, i think so.

so, let's make her birthday goal happen.

are you with me? any amount will help.

let's do this, i know we can. 

thank you. xoxo

super important update:

+++ my friend mary in wisconsin had her pet scan today and there is no melanoma anywhere else in her body. yes! she will start treatment soon so keep your fingers crossed that her side effects are minimal. she will have a port installed soon and then she will start kicking melanoma's ass. of course, i will be providing updates as she moves through the upcoming months.

+++ oh, and one other thing, f*&k melanoma.

check in day at the oncologist + good thoughts for mary

today was check-in day for me at the oncologist.

bloodwork first.

appointment second.

my bloodwork looked good but my potassium continues to be low. even after we doubled it after the last visit. that might be adding to my fatigue. so now we are doubling it again to see if that helps.

next up is scans next friday.

then comes the results on the following monday the 15th. so start sending the good vibes my way please.

the side effects continue.

my joints hurt pretty bad. some days i need the cane to walk. some days i don't. just taking it day by day. but i am pretty much hurting 24/7 it is just a question of which joints hurt the worst on any particular day.

my hair continues to fall out in clumps. my scalp is so sore even to the touch. i don't have any bald spots quite yet but it will just be a matter of time. some days i wear hats to work just because i get mentally tired of seeing my hair fall out onto my clothes even when i am not touching it.

fatigue continues to be rough. so tired all the time. there are times when i just can't keep my eyes open any longer (not when i am driving - don't worry, but at home). i pretty much want to nap all the time but life doesn't work that way unfortunately.

i also want to ask that you start kicking up the vibes for my melahomey mary in wisconsin as she goes in for her pet scan on october 5th and we need to ensure that melanoma does not show up anywhere. then she will have discussions on treatment and how to keep the black beast from coming back. so get those vibes, prayers and mojo going for her please.

sorry that i have been so quiet here. 

i never mean to and then the days roll by.

hope that you all had a good monday and your weeks are off to a good start. xo

beth's results are in...

you all work magic.

let me have her tell you in her own words.

thank you for all of the love, prayers, and mojo you sent her this week. it worked (but we all knew that it would. right? right.)

have a good weekend all - xoxo

The results are in

So the scans showed everything was stable with some minimal decrease on the nodules.  While that was not the news I wanted my doctor explained a bit more to me.  He said the nodules are so small he doesn't actually expect them to disappear.   What we hope will happen is that the cancer will die in the spots but the spots will likely remain because of scar tissue.  So in some ways you have no way of knowing if that is happening except when I go off treatment if I don't get any more spots it means the cancer was killed.  So now I guess that is what we root for.  My doctor seemed pleased and not surprised.  So i'll take it as good news.
   My labs all looked good so once again I celebrate by going to infusion.  I am in my room now waiting for them to start.  My neuropathy had been flaring up so my doctor is dropping the oxaliplatin.  That will make my infusion appointments shorter, I should feel a bit better, I will drop the cold sensitivity (ice cream here I come!) and my neuropathy won't get worse and hope it gets better.
     And hopefully it will help with the fatigue because it's a harsh drug.  My doctor is calling this maintenance chemo.  There is always the chance I have to go back on the Oxaliplatin but we all hope that is not the case.

   The other drug continues to fight my hair and now my eye lashes are falling out.   I hate this side effect.   After the wedding I may cut my hair shorter.  But still use a hair cap.
    
   I have been really tired, probably because I am a bit overwhelmed with things.  I had people in town last weekend for my wedding shower which was so much fun.  Wonderful to have people I love all in the same room. I  had to pack up my office because we are moving spaces this weekend, I have a lot going on at work and things to do and we have wedding plan details.  So it's a lot right now and I am just tired.  I will keep it low key this weekend with probably lots of sleep.
   An update on Alli.   Her blood work looked good earlier this week.  She will remain on her dosage of drugs until her scans in October then will reassess.    She continues to have a lot of fatigue herself.
   I also have to bring up another friend's husband, Scott.  He is now on a heavy dose of chemo and needs all our support and prayers as well for a great outcome from his treatment.
   So thank you for your love, support and prayers for all of us cancer fighters.

send beth all you've got for thursday

beth get her scan results tomorrow (thursday) so send her everything you've got.

she gets results at 1pm pst so you have most of the day to send the love (of course you can keep sending it after that time as well;))

i will be watching my phone like a hawk to see what the update is - knowing it can only be good news for this girl who gets married in less than two months to an awesome man.

so send everything you've got her way and i will let you know how things turn out.

thank you from me and beth.

gloves up for beth.

xoxoxo

mondays

today was definitely a monday, from start to finish.

my bloodwork was good, only issue is that my potassium is low which is odd since they have me taking a supplement every morning. so i am going to take twice the amount and we are going to see what the change is in my bloodwork in two weeks. otherwise, all else looks good. we are staying on the same medical dosage (and stay on one drug) until my scans in october. we are going to decrease my steroids though and see (hope that it does not) cause any issues for me. we shall see, the decrease starts tomorrow.

beth had her scans today and all went as well it can when you are doing scans. she is very tired tonight and doing ok. remember her results don't come until thursday so please keep your prayers, mojo, and love going her way until we get the good news that i know is coming.

ok, that is all for this monday - hope your was better than ours.

gloves up for beth.

xoxo

prayers/love/mojo for beth on monday + thursday / oncology appt for me on monday

beth has her scans tomorrow for her next check in on how her drugs are working. she will get her results on thursday (delay due to doctor schedule - no one likes waiting on results). so please send her all of your prayers, love, and mojo this week until we get those good results on thursday. here are her own words about this week:

Next scans 

I know I have been quiet in this space.  It’s been a busy few weeks between work and wedding planning.  
   I did reduce my dosage of chemo.   And that has made me feel a bit better.   But this past week my neuropathy really flared up in my hands and feet.   So I am seeing my doctor next week and we will talk about dropping the med that causes neuropathy and the cold sensitivity.   It may be time. 
    But the big thing coming up this week is my next set of scans.  Tomorrow I go in at 1:30.  Drink my contrast for an hour and my scans will be at 2:30.   So that I can see my doctor for the results I won’t see him until Thursday at 1.   
   These scans will start to be telling if the immunotherapy drug is helping.   These scans and the next one in 9 weeks.  Although 9 weeks away is wedding time.  Yikes!   But we will work something out for my scan schedule.   Before my scanxiety was off the charts. I think because I knew the results were critical and scary if my cancer is back.  But for these I am not as anxious for whatever reason.  Maybe it’s because my cancer is back.  
   I found a new therapist who specializes in helping people with cancer.   It’s a short term process with her but I am excited to work with her and I think she can really help me deal with those things that hang over me with this diagnosis.   
   I will let you all know the results of my scans.  And to celebrate those results I go right into infusion after I meet with my doctor.  
   Thank you for your love, support and prayers.   

this weekend we celebrated beth's upcoming wedding and it was so good to just get to have an afternoon to celebrate her and her awesome fiancé lars. so happy for both of them.

tomorrow i go in early for bloodwork and then i have an appointment to see if we are going to increase my treatment meds and if we are going to add the second drug back in. i will let you know how it goes with a post tomorrow night.

for now i am off to zzzzzzzzzzzzzzzzz before my big brother starts harassing me.

gloves up for beth.

xoxoxoxoxo

friday night - stand up to cancer television broadcast

tomorrow night is the annual "stand up to cancer" event which is televised on all major tv channels simultaneously.

you hear from the doctors dedicated to finding cures and pushing the latest science advancements.

the stories of patients. those still fighting. those that laid down their fighting gloves for the last time. the families. the caregivers. 0h, the stories. if you are like me, have some kleenex by you.

it a night of television i will not miss every year.

i hope that you will join me and learn about the ways you can help to stand up to cancer.

you can donate if you choose to.

here is more info on the show and the times it is on where you are and how you can donate if you would like to.

it is hard for me to watch? absolutely.

but do i think the stories are important to watch? absolutely.

will i hear about science that may benefit me or give me hope? absolutely.

will i hear stories that make me sad? probably.

but i will watch (and cry), because the stories need to be heard and those that are doing their best to finding cures need to be supported.

one night where all tv channels focus on cancer and finding cures.

the most important hour of tv all year in my opinion (and we need more hours like this one).

gloves up.

around here, part ii

+++ around here i stood in the shower this morning holding two hands full of my hair. it just about put me into a panic attack but luckily i took my meds not soon after and my anxiety started to calm. i will definitely be writing more soon on anxiety, i think that it is a subject that does not get talked about enough.

+++ around here my bloodwork looked good.

+++ around here we are going to decrease the steroids by 5mg and stay on the same dose of the treatment drug. we will go back in two weeks and if things are still stable, we will talk about increasing or adding in another treatment drug. scans are probably a month or so out, no date scheduled yet.

+++ around here beth goes in for her next round of chemo tomorrow. please send her all of your love mojo, and prayers as she faces this next round.

+++ around here i am tired so i am heading to bed (big brother, aren't you proud of me??;)

happy wednesday all, we are already halfway there.

xo

around here

+++ around here we had a great last summer weekend in idaho with family. where did summer go? i don't know either.

+++ around here tomorrow i go into scca to see my oncologist. we see how my bloodwork is doing and determine whether or not to increase the dosage on my treatment meds. we will see how it goes.

+++ around here i am still having joint aches as my main side effect, as well as the fatigue. the joint aches are better if i take Tylenol to dull them and i can still walk and get around by myself so that is good. 

+++ around here i wake up each day and find more and more hair on my pillow. it also continues to come out a lot during showers so we will see how that continues to go. it is hard to see it falling out, i am not going to lie about that.

+++ around here school starts tomorrow and the routine of all the activities begins. here we go 4th grade. how is that possible either? i don't know either.

+++ around here i hope that you all had a good summer too and i will let you know what we decide tomorrow.

anywhere i fight, you fight.

gloves up.

xoxo

this is one for mary

my friend mary in wisconsin that had no evidence of melanoma for 14 months found out on friday that the melanoma is back. she had a lump removed from her leg and it is melanoma again. the tumor has been removed. so we need to send her our good vibes, love, and prayers that they show the margins are clear and that her pet scan (full body scan) to follow will also be clear.

thank you in advance, both mary and i really appreciate it. we have been rooting her on for years in this space and i wish we didn't have to do so for this reason, but i do believe that we are going to bring her some magic.

i also wanted to note that kelli continues to be very grateful for the happy mail that she has received and has been overwhelmed (in a good way) by the kindness. so thank you and know that your time and efforts are being so appreciated more than you can imagine. kelli participated in a ragnar race around mt. rainier this weekend and their team ran 127.2 miles over 30 straight hours in a relay and climbed 38,000 feet in elevation. they wore shirts that said "johnwoulddoit" and the woman giving out the medals gave one to kelli in honor of john. she kicked some major ass this weekend and said it was john she did it for and only because of him that she was able to finish.

thanks for all the love you all send out into the world to people you don't even know. it makes such a difference in lives, and it makes me happy to think that about all the mail, prayers, vibes, and mojo that criss-cross this country on a daily basis for those who need it, including yours truly.

with that, we start another week. here we go peeps. xo

and the card giveaway goes to......

my friend kirsten in texas - woohoo!!!!!!! it is fun to have some more happy mail crossing the country in the next week as she gets to pick out cards and they get shipped;)

day two at work was tiring but i made it.

no major side effects yet (or ever would be my preference).

happy thursday peeps, we are one day away from friday.

we can do this.

reminder on 5 card giveaway + first day back at work/driving + update on kelli/beth

first, here is your final reminder to let me know today if you want in on the card giveaway i am doing to celebrate the good news on my scans. for all of the info, click on over to the yesterday's blog post to get the details. but you need to let me know by 9pm wednesday so you can be entered in for the random number generator gizmo to pick you!!!

today was my first day on my new meds. the work they work is that i take a steroid in the morning an hour before i eat, and then the treatment med two hours after i eat. then i repeat the pattern after dinner. it is hard to remember to not eat within those hours and get myself back on that system again. but i will get used to it.

today was also my first day back at work. it felt good/odd to be back and in some ways like i had not been gone for 6 weeks and in other ways that so much time and so many things had happened. so it will be a learning curve as i get caught up.

i also drove for the first time in 6 weeks today and am happy to report i can do it again with no problems. ah, independence.

i also wanted to share beth's latest update since she had a post today so that you know how things are going and have included it below. keep sending her the love.

i also wanted to mention that the kelli happy mail campaign is underway and she is so, so thankful and overwhelmed by the generosity of complete strangers. thank you. thank you. thank you.

have a good wednesday peeps. we are halfway there. yes to that!

Is it over yet?

Tomorrow marks the start of my eighth cycle of chemo.   Last time I only did 8 cycles so this should be my end.  And yet it is not.  I have a long way to go.  It's still really hard for me to grasp it at times and do a mind shift.  I like being able to count down and have a finish line.  Right now my finish line is 2 years.  
    Some of my side effects are building.  I definitely have fatigue.  I get really wiped out in the evenings if I haven't taken a little cat nap.  My hair loss continues and I have started to wear my hair cap again.  It's weird to wear it again and I am getting used to it.  But my hair is looking really bad without it.
  The hand foot syndrome is what is causing me the most grief, more than neuropathy which has been manageable.  My feet get all read and feel inflamed which isn't the most comfortable feeling.  And unfortunately this side effect is from the chemo in the pump which is what will be on going.  I talked to my oncologist last week and we may be reducing a dose here soon to see if it helps.  I asked him if it was bad to reduce the dose and if it would effect my treatment and results.  He didn't think so.  He said it's common for people to reduce their dose and that is what they stay on.  I never thought I would keep at this dose but thought maybe I would be able to keep it up longer.    
  Hopefully a reduced dose when it happens will help all around with how I feel, less fatigue, less hand foot syndrome.   Once I drop the one drug my fatigue should get better according to my doctors.
  I haven't been able to do many walks these days because our air quality is so awful and they are telling us to stay indoors.  As I look out the window I see so much smoke.  It does start to bother me with my lung issues.  So I am looking forward to better weather and less fires.
   My next set of scans have been scheduled.  Sept 17 with results on the 18th.  These will be critical scans, they should start to show if the immunotherapy is working.  So I am really hoping for shrinkage this time!
     In others news Lars and I flew back to MN a couple weekends ago for our first wedding shower thrown by family friends.  It was a lot of fun and great to see so many people I haven't seen in ages.  Their support both in our marriage and in my treatment means a lot to both me and Lars.  
  Lars and I got back our photos from our engagement photo shoot.  They turned out really well so we enjoyed looking through them.  August has definitely been a busy wedding planning month.   We started tasting wedding cakes and booked a bunch more of our vendors.  It's been fun and work and I am so thankful to have our wedding planner to help take some work off of me.
  I have noticed some people at work treat me differently.  They don't reach out to me, ask me to do things or invite me to some meetings trying to leave me alone while on treatment.  I had a talk with one of my bosses last week asking for people to include me on things and let me decide what I can and can't take on, rather than them deciding for me.  He is one of the ones not treating me differently which I appreciate.  But it's a struggle.  I get it.  But I want to still contribute here and I have actually been really busy.   On a good note I found out last week I won a big project I proposed on.  And it's a good win and I was glad to still be doing good things for my company and for me.  I want to still feel useful even though I know I cannot do it all and I don't try.  I do know my boundaries.  
     Alli has had her highs and lows recently.  Her new meds started making her really sick again so she had to go off of them.  And I get the disappointment when you just want these meds to work and if you are sick you want them working that same magic on the tumors.   She then just had scans and is showing some shrinkage of her tumors!!  Which is such good news!!  So they are starting her back on one of her last drugs at a lower dose and will keep an eye on her to avoid the fevers and fainting.   My heart breaks when I know how bad she is feeling but she is a fighter and will go back in the ring as she puts it.  So we are all pulling for continued good results.
    I have been having fun recently with seeing friends and Lars and I went to a lot of sporting events over the weekend.  And I dread tomorrow as I start to feel bad again for a good 5 days.   I look forward to my bounce back times in between treatment.
    Those are some of thoughts that have been rattling around in my head recently.   
 I thank you for your love, support and prayers.