SCCA

imageHere we are at the top of the space needle. It was cool. When we went up early it was not so busy.Later, as we left it was so packed, so I’m glad we did it early especially after Dr. Cafey says if I’m neutropenic avoid crowds. Kinda freaked me out a bit.

So, SCCA , Seattle cancer center alliance. Wow, it is very big, overwhelming, and lots of very chemoed out people. I was definetly not liking being there. Somehow when you’re not on regular IVs or getting weekly treatments it’s easier to ‘forget’ that you are a cancer patient. At least I do. I’ve never been a gung-ho, I’m going to attack this with everything, I’ve just done what’s necessary and moved on.

So, Dr. Caffey, is probably young enough to be our kid, but very informed and took his time asking questions. The jist of it all is just keep doing pomalyst, then when that is not working, move to the other line of chemo that’s the Velcade and krypolis.  Also, unfortunately my BMB did have any genetics and so next time he asked to do that. It’s really too bad with the outrageously expensive ( co pay) we have we it wasn’t in the screening. Bummer.

All in all I am confident that my doctor is right on( I was anyway), but now it’s reassuring.

even at this point, he said I’ve barely begun to use what’s available, so that was kinda reassuring too.

Unfortunately, no clinical trials unless I live there. And he said if I did he would put me in one. Also, I’m not technically a patient of his as I don’t live there. So that was kinda weird, since I thought this was the idea, to bounce things off him.

I think my next plan in maybe six months or a year. Depending on how things go, I’ll check out going to Stanford or UCSF.

regardless, we both felt very pleased with the consultation, and hey, I got to mark Seattle off my bucket list.

💫✨🌟😀

Seattle!!

image imageWe are having a lot of fun and doing tons of walking. You’d think with walking everyday in the JKWP , I’d be ready for this. So, not! I’m sore and my legs are like noodles. Well, this might just get us to do more walking on hills. So, we’ve been to Pikes place twice, the original starbucks, the very beautiful and modern library, out to Bainbridge island on the ferry and tons of other things.,today, though is the big day with the doctor. I hope they haven’t screwed up my appointment.  First we’re going to the space needle and will take the monorail there. Then we will have to get a taxi to the SCCA, as it is too far to walk.,

We had a very expensive dinner last night but worth it as the food was exceptional. Today we’ll keep it cheap with starbucks breakfast and something light for dinner. Tomorrow its home. Since I’m a homebody, I’ll be ready.

Squash and more squash!

image imageWe are getting a lot of zucchini and patty pans. So, we’re eating lots of sautéed squash. B bought me an Oxo mandolin so I’m thin slicing the squash and sautéing. Last night it was squash curry with rice.

Im sure we will be tired of it before long but for now fresh from the garden is nice. Plus a few tomatoes are coming in

Our super hot weather has left and its a nice 88 something in the afternoon. I think today is less. We leave for Seattle tomorrow and I’m excited. Unfortunately it’s very hot there. That’s very unusual, as it’s usually like in the 70’s. Oh, well, we shall still have a nice time. Once I get thru the doctor appointment we can go have fun. We were going to rent a car, but then the travel books all said parking and driving in Downtown Seattle is a nightmare. So we decided not to and we will take a cab up to the cancer center then see how close things are from the hotel.

Well, off to do some tidying and meeting my friend to drop off eggs!!!

Happy 4th of July*~*~*~

imageHave a great 4 th!!!

I’m going to BBB a grass fed piece of tri tip. Hopefully I won’t ruin it.

we had fun at Old Navy yesterday. My daughter got some cute skirts for work. I got one navy blue blouse for Seattle. I generally only wear, black, dark blue or white. I only wear jeans. With these tops. And v neck( usually) white or black t shirts. I find it freeing to wear basically the same things. It’s one thing I really embraced when I started my minimalist journey. I’ve never had a lot of clothes anyway, but this just made so much sense to me. I don’t even own a skirt. Well, there might be a long black one in there I’ve used on Halloween as part of a costume. 🙂

Have a great 4th!!!

Neutrophils up!

So, good news. My neutrophils are just under 1400 so he said start Pomalyst. So that makes the cycle , 3 weeks on two weeks off. Not bad, as long as its bringing my KLC down. We shall see in a month.

Its still hot, but not as bad. It’s around 95 today.

B is off with my son to help at the High Sierra Festival. He gets free tickets in exchange. It’s terribly expensive. I’m not sure how people afford these things but it’s sold out. Anyway, I don’t do large crowds or music like that. But he has a super nice place to park the tent trailer so that’ll be nice for them. I have tons of food packed for them and my son also bought a bunch.

Today, I was going to go to Old Navy but my little coffee klatch is at 11:30 so that’s not enough time to get down there, shop and get back. So we will go tomorrow. Fun!!

well, I’m off to do some laundry and tidy up.

Seattle, here we come!!!

It’s official. we are going to Seattle next week. Dr. Libby is starting a clinical trial and is not taking new patients, so I’ll be seeing another specialist, Dr. Green. We will spend 3 nights there so  we can sight see. Seattle is on my bucket list so, all in all a good thing.

I was think of starting a gofund me account..to help with this expense but feel kinda weird about it.. any ideas anyone.??? Not sure how to do it. But with plane tickets and hotel, food.. we’re probably looking at $1800. The hotel is almost $800, yikes!!!!  Maybe this is why I haven’t done this before, because its dam expensive.Well, at least this will give me a different look at my myeloma. I’m fortunate I’m not in crisis mode. I don’t like surprises, so hopefully nothing alarming comes up.

I’m off for labs today, a few groceries (ha!) ,then maybe a couple of other errands. I’m going to go buy a top or two at old Navy to bring with me to Seattle. Maybe tomorrow if my daughter wants to go too.