I want to go home and singing and bad hair day

Luke came over and sang to Laura as she fell asleep this afternoon

Bad Hair Day Mia.  The groomers made our dogs into something else

Louis looks like a villain in a super hero movie. Bad Louis!

Last night, while  I was brushing my teeth and getting ready for bed, Laura packed and said she was going home.

Julia was with Laura most of today and then Rachel came over in the afternoon and took Laura for coffee and got our dogs from the nasty groomers who took all our dogs facial hair off...

Laura is obsessed with going home. I and others have asked if "home" is death and she says no not at all. I don't want to die.  She has said Home is in Maine and Home is in a cabin that we have and Home is in Oregon. My resident expert on dementia, Rachel- whos mother is in a memory care home, says that lots of people with dementia want to go Home and it is often a moving target. 

Laura was also talking about the rabbits in the trees today. She is still pain free but her dementia is changing by the day. It is sad yet oddly fascinating watching all this. Our friend Luke Y. came over this afternoon and played some music for Laura. I might be able to figure out how to put an audio file on this blog. But unfortunately not right now. Here is Laura singing Buckets of Rain from 2016:

And here is Thunder Road also from 2016:

The weekend

Since we had BBQ Pho for a late lunch, Laura had a honking big piece of cake for dinner!  Yummm

My cousin Michelle Mills and her man Michael came for lunch on Saturday.  They have been on a 9 day
Tour of Oregon.  It was better than chocolate seeing them! Michelle is wonderful.  We ate freshly
Caught salmon and fresh Oregon shrimp with goat cheese and avacodo.  The food we eat is important so I will let you all know about it.

We bought a boat with two other families last fall.  This is John W on an early morning salmon fishing trip.

Michelle and I on our 3rd floor deck

Today, Sunday, Laura and I had a date in the late afternoon to the local BBQ shop, Smoked Bones, and ate amazing Pho with smoked pulled pork and home made pickles and such

Gordon is on the left and is the other boat owner.  Tom and Paula A. visited from Hood River and I had to take Tom out fishing.

Out on the water is one of my happy places

Gordon's son, sure likes going fast on the boat!

We had a good weekend.  As you can see, I fished every day...  Julia, Rachel and Paula each took a morning to let me fish. We caught three Chinook Salmon and one Pink or Humpy salmon. VERY strange to catch Pink salmon in the Columbia River.  Like unheard of strange, but we did!  We have eaten salmon a lot this weekend and I am brining about 10 pounds or more to smoke tomorrow.

But you are hear more to hear about my sweet wife and not about fishing...  Laura is pain free and pretty spacey. She really enjoys seeing people but gets tired quickly and naps a lot. She talked to her brother Dan and a couple close childhood friends this weekend.  It was sweet. Sharon has sent tons of young laura pics which I will try to put up tomorrow.  I continue to take Mon and Fri off.  Friends cover for my Tues, Wed. and Thurs through Aug.  We have a home health group coming in come Sept.  We will hire people for Tues and Wed. and John W. will take Monday afternoons and Thursdays. He is a saint. We went over to John and Rachel W. house and hot tubed tonight.  It has been years since Laura hot tubed. She loved it and said she would sleep all day tomorrow! We will see.  Thank you for thinking of us and being our friends and family. peace and love to you all.

Pics from today and an singing link from a few years ago

It's Thursday night!  I am off work till Tues. AM. We are good.  or at least good enough for us.  Laura went to bed at 745 tonight.  The last two nights, we went to bed at 830 and I went with her cause I was to exhausted.  But tonight i am writing this and cleaned the kitchen.  We had Tess R. clean our entire house today which was amazing. It is sparkling.

Julia M. was with Laura most of today and Rachel W. came for lunch and on today.  I got home just before 3 pm. Rachel told me that Laura got all serious and said, "Im frustrated that I cannot turn into an animal. *pause* Im not very good at it."  Rachel said (after thinking of lots of questions) how frustrated are you Luara, a lot or a little? Laura said, "just a little"  My honey is mostly happy, at peace and totally out there.  I am keeping a page of Laura quotes on my phone.  Ill share.

Wanna see Laura singing Boy George on her Yuke? This is from 2017 i think; check out the link below:

https://www.youtube.com/watch?v=jsK5iGsMaQE

Ron D. with Laura by the peas looking for more peas to harvest.  She loves being in the garden so much these days.  It is truly beautiful.

She is actually harvesting big raddish seed pods but they are kinda yummy.  A couple last sugar peas too. Pole beans are growing up the peas now so there will be beans soon for her to harvest.

Mia and Laura eating dinner.  Ron and Lucille DeVargas brought pork chops, mashed potatoes and corn for dinner.  it was a feast!

Just resting with Mia the cancer dog.  We got Mia from the Pound after she was abused as a 1.5 year old about 7 months before Laura was diagnosed with cancer for the first time in aug of 2012.  Mia has been by her side since.

Rachel and Julia (not pictured today) were with Laura today while I was at work.  Sunflowers from our garden planted of course for Madeline. 

Laura care givers today

Ami and Laura on our back deck

Suzanne and Laura on the river walk in front of our house.

I went to work today and Suzanne, Ami and Rachel(not pictured) hung out with my my.  I’m taking Monday’s and Fridays off in August and plan to continue to do so for the foreseeable future but I can’t really say that since I have not talked to HR nor my boss yet....  I have friends coming every day but one so far filled with friends coming to be with Laura while I’m at work in Aug.

When I got home from work today, I walked the dogs and the wife on the river walk.  She was cognizant of her situation in hospice and dying which she often isn’t.  She kept saying she was sorry for messing up the kids and my life.  Then we napped together for a bit.  It was sad but very sweet. Each day is different so far.  Today she wanted to hold hands and cuddle.  Yesterday she was made at me for moving our room down stairs.  One step at a time. Peace my friends.

Protection

Mia is next to Mom making sure she is good.  And Louis is in the background on the chair watching out the driveway gaurdimg his Mom too!

Laura is starting Home Hospice

I am starting this blog again to try to let people know what is happening and to let Laura's friends and family see pics of her. Laura has started home hospice and stopped all treatments for her cancer. The cancer in her lungs and brain is growing quickly and her cognitive abilities are slipping quickly. Laura, the kids and I decided that it was best to stop treatments and the side effects of radiation and chemotherapy now to give her some good days, weeks, and months while she still knows us all.

Laura is generally at peace and happy. Some days she knows she is in hospice but many days she does not know. She cannot follow a conversation, but likes to have people around and she likes listening to people. When she talks about half the time it is on topic and about half the time she says something that feels like that strange state of mind as you are just going to sleep and you start to dream bizarre things and you jolt awake wondering where that came from. She says stuff that is often related to the conversation but totally different as well as  not based in reality. She is definitely hallucinating things, events and people. Laura is not in any pain right now and isn't taking any pain meds. One funny conversation we had a few days ago when there were people visiting was, "Do you want to take a nap?" Laura:" Yes I do, but I do not want to be alone. What's a girl to do? Well, you could keep talking to the people on our deck and leave the door open and I could nap in that strange bed in our living room and still hear you talking." Which she did.  I must tell you, we have moved our bedroom downstairs so she does not have to use the stair since she falls most days and has no balance at all.  

The hardest thing has been the relocation of her bedroom and using the down stairs shower.  Every night, she gets disoriented after going to the bathroom. We have about a dozen bells on the curtains going into our new bedroom so I wake up when she gets up and I can get her back to bed.  She really does not like having the living room as our room. In general, Laura is happy and loves to eat. She is eating well and eats cake almost every day which is a beautiful thing. I will try to update this blog regularly.

 Ami and Julia out on a lunch date with Laura at the Buoy Beer.

Joey and Laura

reading at the Whisler's house

Arria and Laura enjoying sunset

Moria and Louis having some Laura time

Cousin Tim helping pick peas

Out to dinner with Ani and the cousins!

Mia, the Cancer Dog, keeping close track of Laura

Laura loves weeding.  Even weeding all the sweet peas, a quarter of the bush beans and many flowers, but she loves to weed!

Laura's childhood friend Lauren came out just before Laura went into hospice

Richard came down from Seattle with so many pastries! It was glorious, but the food and seeing him.

Julie came for a visit

She is ok with the bedroom when there is breakfast in bed (every day)

I just love this picture.

This is at the last appointment with Dr. Lysette. Somehow strangely and sadly fitting Taeryn was at the appointment with us when we decided to stop treatments and start home hospice.

My thoughts on cancer:  every now and then, I try to write something about what it’s like with my wife having metastatic breast cancer (MBC).  Laura has been living with metastatic cancer for just over 33 months which happens to be the median life expectancy for someone with MBC.  This statistic could be a little skewed since there are a couple of new chemo drugs (herceptin and perjeta) that have become available over the past two to four years that should increase life expectancy for those with HER2 positive breast cancer.  She is on chemotherapy and will continue on chemo of one type or another for the rest of her life.

Right now, Laura has five brain mets (tumors) she is just walking around with.  They are very small so her radiation oncologist just wants to wait before doing a procedure.  But this is me telling facts and not feelings.

Ever looming is death.  Metastatic cancer is the cancer that kills.  So death is the first thing that is always lurking.  Every three months she has scans and we see if there is cancer in the body or in the brain.  Her cancer likes to invade her brain.

But besides the big thing (death), is the human trait of planning ahead.  Thinking of the future.  Our future is lived in three month scan cycles.  But at the same time, I think about what is happening in ten years when I’m in my early 60s.

My birthday is next week.  I will turn 53.  My Dad died when he was 52.  I have been afraid of 52 for a long time.  Laura made it past 52 and it looks like I will too.  But it brings up lots of emotions - especially the long-lasting void left for my wife and kids, who never met my real Dad.

What is it like living with metastatic cancer (from a caregiver/observer view)?  Day to day can be good, generally is good.  Dog walks and amazing dinners.  Laura is cooking more than ever before in our marriage and the food is amazing.  But there is a knot in my stomach; a catch in my throat when someone talks of retirement or the future.  I wonder if I should be paying attention when people talk about swiping left or right on Tinder or Teaser(?)  or whatever the dating app of choice is.  Will I be looking for  someone to retire with in 15 years or will Laura be there by my side?  Like everything in life, I just don’t know but my mind wonders to the uncertain future late at night or early in the morning.

I also feel guilty about wondering about my future when Laura is doing well while having cancer in her brain.  There are interesting and potentially life saving drugs out there in trials which could make all the difference in the near future.  

Am I a bad person for making jokes that she can’t remember something?  She does not have nearly the cognitive abilities that she had five years ago. Brain radiation will do that, as well as years of chemotherapy. Her eyesight changes every few months and she needs new glasses lenses, but I taunt her for not being able to see…  I know, I suck and should be better but I can’t help making jokes about what is hard.

We are thinking and dreaming of building out on our Knappa land above Big Creek.  It is great to think about moving out there when I retire, but what does that really mean - am I with Lu or alone?  

If you have read this far, please do not worry about me.  I am the same ebullient, happy-go lucky-fellow you know.  At times, I think too much, just like my lovely wife.