Still waiting to hear from the radiation oncologist... I called yesterday and spoke to his assistant who said that UW still had not sent his scans to them... She was gonna contact them and see what she could see. We hoped we'd hear from her today, but we didn't. Dr. Taylor doesn't work in Bellingham on Mondays/Tuesdays, evidently.... Hopefully, we will hear something tomorrow.

I have also been in contact with Hospice House to just find out information. We're not ready to sign up for that quite yet, but we think it'd be helpful to hear what it's all about. The nurse I spoke with was very helpful and said they can come to the house to discuss everything. 

The girls (all three of them) and I had a good talk last night about reality. It was hard, but it was good. I think all of us needed to just release some emotion together. 

Harv continues to either be uncomfortable or in pain. And, occasionally, when he exerts himself (walks to mailbox, stands up too long, walks up stairs too soon) sometimes he gets sick. That's not much fun. He's not eating much, but I'm trying to fill him with protein and some fatty stuff. A friend gave me a great recipe that, to me, tastes like custard... He liked it.

He's been sleeping much of most days. 

I've told the girls that I either want him to be healed or I want him to be healed. I don't want him to feel bad anymore. I don't want to lose this good man who is my husband, but I want him to stop being sick. 

I do not know how to do any of this... But we will do the best we can... 

Please pray for all the right things... whatever those things are... I don't even know how to pray.  Pray for our children. Pray for his siblings. Pray for his parents... And pray for me... 

Thank you so much for loving us.

Many blessings to you all.

Update

Last Friday Dr. Taylor (local radiation oncologist) called Harv to give results of the scan he had had the day before. It appears that the tumor that's causing the most pain and is the largest is the tumor that Harv had radiated earlier this year. Dr. Taylor needs to confirm that with UW Medical Center scans (which he hasn't rec'd yet), but he thinks that's the case. He's out of town this week but hopes to have that information when he returns next week.

If it is, in fact, the case, then that means that radiation is no longer an option. 

It's possible that there's a trial or some kind of chemo available, but Harv and I have talked and he feels that he's not strong enough to handle that.  He feels that most likely any treatments that remain available aren't worth the discomfort and toll on the body.

So... We'll wait to hear from Dr. Taylor next week and see what's next... But we believe that what's gonna happen is that we will treat his pain and discomfort.

Only 3 1/2 weeks till Celeste's wedding... We want him to feel as good as he possibly can for that.

We appreciate all the love.  We would appreciate prayers as we try to figure out how to navigate the next stage.

We love you.

Celeste's wedding is in five weeks. FIVE!  :-)

We go to the radiation oncologist in town this week to see what he thinks. Not sure when he would start or how many radiation treatments the doctor will recommend. Dr. Lin has said that he thinks he'd like to add some low-dose chemo to that as well.

Based on Harv's experience last time with radiation, he is expecting to feel pretty tired and possibly nauseous from the radiation at the minimum. Maybe even more so if chemo is added.  He currently is already pretty fatigued and his appetite is not so great (He's eating often, but not a whole lot.).

SO! I'm asking if you will pray that the details of his treatment work well for him and that he will feel energetic for the wedding weekend. We'll be "on the go" from the Wednesday to the Sunday of that weekend.

'Preciate it!

Love.

Being at home seems to be a good thing... And, Harv has tried really hard to eat more proteins every day. I wouldn't say that he's overflowing with energy, but today he seems ever-so-slightly more "energetic." He even went for a walk to the mailbox... which is a pretty good walk. He might even try to go again later today.

We have a radiation oncology consultation scheduled for next week here in Bellingham. Hopefully, that will be able to be done fairly soon and with minimal side-effects. Want to be ready for the wedding (which is just about one month away)... After that consultation we will have a phone appt. with Dr. Lin and discuss what we learned and how, perhaps, a low-dose chemo might also fit into the plan.  

In addition to Celeste and Anthony's upcoming wedding, Sarah and Hannah are also gearing up to start at WWU at the end of September. Somehow all the little details of everything that's comin' up will fall into place, I know. Lots of fun things on the way.

That's all for now. Thanks for checking in. 

Love.

Away time...

We left last Sunday for five nights at Kalaloch Beach... It's a part of the Olympic National Park and it's one of our favorite places. Celeste and Anthony joined us for the first two nights as well.  

We always take our own food and cook in the cabin -- which we did again. We usually go for a couple of walks on the beach each day and, usually, Raney is off-leash the whole time and we can walk however long without worry about her being on-leash except for right close to the lodge/cabins. Not so this time. She is still healing and I'm afraid she might tweak her leg so she and I went on a short-ish walk a day and mostly on-leash.  She was kinda bored. She DID get a couple or three off-leash walks which made her very happy -- and sometimes defiant. 

This trip, Harv and Anthony brought kites and we rigged up something so we could attach the GoPro to the kite and see what happened. Actually, I didn't rig anything up... they did. Harv made this  gizmo that somehow attached to the kite and held the GoPro in place.  I think they tried it Sunday and Monday.

What we found out, though, was that going to the beach was just a little bit too much for Harv.  He had a time walkin' back up the stairs back to the cabin. And, he found he tired pretty quickly on the beach, too. Turns out that after a couple of days of tryin' that, it was determined that it was best to stay on level ground. And, he slept a lot after that.  And, his appetite wasn't very big. And, he was in a fair bit of pain in shoulders and back. So... pain medicine was had. Which helped.

We got home early evening yesterday and unloaded, ordered pizza and watched tv. Today was unpacking and decluttering around the house... (PLUS, let's go get the bridesmaids' dresses day). Harv woke up with way more energy and "enthusiasm" than I've seen in five days... So, it appears that home is a pretty good place to be.

Not sure what the next steps are yet with his medical care... Hope to find out Monday or Tuesday.

Thanks for checkin' in... Will update when I know more. Love you people.

Update

Sometimes you need a glass of rosé.

First of all, I had a WONDERFUL time in New York last week hangin' with family. I ate good food, saw a really great play that one of my nieces wrote and that both of my nieces are in, saw some sights and survived the heat and humidity (UGH! I had forgotten how oppressive humidity can be.) The best part was being with family. So thankful it was possible to go!

While I was in New York, we worked hard to try and figure out a way to reschedule our Dr. Lin appointment because it was accidentally scheduled on the same day as Harv's pain clinic appointment. There was no way he was gonna miss the pain clinic appointment. Thankfully, we were able to work it out so Harv could see Dr. Lin today... Which meant that we got up sorta early (not very, but sorta 'cause I just got back into town) to drive to Seattle... 

Harv had blood work, we saw a nutrition specialist and then we met with Dr. Lin.

Unfortunately, the numbers that are supposed to go down are not down and the numbers that are supposed to go up are not up. His CEA is at about 107 -- up from 70-something from last week. Other numbers are also not cooperating, but I don't actually want to look at the charts when they're ugly so I chose to avert my eyes and just listen. 

Dr. Lin doesn't think the chemo is working 'cause of what the numbers are saying and 'cause Harv isn't feeling better. So, we're going to stop the TAS-102. It seems to be more harmful than helpful.

Our time with the nutritionist helped a lot in trying to find foods that work for the cook and for the eater. I hope we can both put some of her suggestions to work and that it'll start making a difference in how he feels and that he'll start to gain some weight.

Next week we'll go to one of our favorite vacation spots and then when we get back, we'll do a CT scan and some more blood work. Dr. Lin thinks that maybe a combination of some more radiation and a little bit of chemo might be helpful for keeping things at bay.

Truthfully, we are aware that we've tried much of what we can try. Nobody's giving up, but the options are becoming fewer.

The plan now is to continue what we've been doing -- which is to fight the best way we can with what we can...and to squeeze as much good ("good" can mean different things at different times to different people) out of every day as we can... Which, truth be told, should be what we do every day, but you know... 

We are thankful for so much -- family, friends, where we live, good doctors... The list is actually very long...

As always, prayers, good vibes, well-wishes, rain dances, chants, good thoughts are all welcome. 

Much love and many blessings to you all.

P.S. Raney started limping when we got home. Same bad leg... Please, please, please say prayers that it's just a tiny little thing and not another need for a veterinary appointment... Hoping the anti-inflammatories do the trick. Goodness-stinking'-gracious alive!

We went to Seattle on Tuesday for Harv's check-up and some blood work. We thought we would also be picking up the next round of the oral chemo that he's been taking.

Over the past few months, he's been a good bit more fatigued (sometimes has three or four hour naps in the afternoon) and his appetite hasn't been as good. He's fairly winded when walking up the stairs -- and sometimes just winded from walking at all. He walks pretty slowly.

The nurse practitioner that saw him recommended that he take a steroid and see a physical therapist to help him increase endurance and strength/ muscle tone. All of his blood work didn't come back but his WBC was low and his liver enzymes were up. So, they recommended we hold off a week on the chemo and go back down next Wednesday or Thursday for more blood work and hopefully start the chemo then.

Harv feels pretty good about that 'cause he thinks it'll make him feel better. I was bummed 'cause even though, after 3 1/2 years of treatment and 3 1/2 years of knowing that plans can change, I wanted to continue with the plan. ("Don't mess with my plans!") 

I think it's possible that the steroid has made a difference already... even though he napped for a while yesterday. He took a pretty good walk...and seemed to have a little bit more energy. Hopefully, after a couple more days of the steroid, he'll feel even better.

Today, I'm headed to New York to see my brother and his family and to see my nieces in the play that they'll be performing in at the Edinburg Festival Fringe in August. Emily wrote the play and she and Lisa are both in it... It's very exciting! And, Clif will be there, too. First time I've seen them all since May.

Prayers always appreciated. We love you.

-chc