Again, more appointments and just out every day. Something this introvert doesn’t like a whole lot but right now, I just need to get thru whatever is scheduled.
Today we’re heading into Sacramento for an appt with the nurse coordinator and social worker. This is supposed to be quite a long appt but I will cap it at 2 hours since that’s about my limit on things like this. If they can’t tell us all the info in that amount of time, I’ll schedule another appt. But initially, this is quite important as we will be giving her the addresses of the brothers for them to contact with the donor test kits. We will at least have that rolling. I think it was mentioned too that B would be tested as well. I’m not sure how that is different from his normal blood tests but it must be. Maybe it’s more genetically involved.
From there I initially thought we’d stop at Costco ( B can’t go in) but now I’ve decided it’s going to be too much to go in there after this appt. I need to get some things and the dog’s medicine is there too so I have to go. But I’m thinking Saturday morning, I’ll take my son as one of the things I need is cat litter and last time I lifted it (35lbs) I hurt my back. So I need someone with me. I usually go on Sunday morning which is the best time, but the pharmacy isn’t open so that’s not going to work.
Tomorrow I have a dentist appt. I’m thrilled( just joking). We aren’t too thrilled with the dentist right now. It’s all about money for them. Plus he sorta gave up on my Invisalign after he realized he was losing money when seeing me. So although it did help quite a bit, it didn’t completely align my teeth. Humm, I wonder if that is in the contract somewhere???
I didn’t walk this morning so I may go when we get back. At least try and do a mile just to get some exercise. The rain is going to come in on Friday afternoon and then all the way till Tuesday plus very cold temperatures. Nothing like the polar vortex but still a high of 48 is cold for us here.
That about sums it up, right??
It’s supposed to be just beautiful today with a high near 70. Well, 67 at least. Then it’s downhill from there. Rain expected later in the week.
We will be going to Sacramento on Thursday to meet with the nurse coordinator and the social worker. It will be a long appointment as a lot has to be gone over about the transplant and the nurse coordinator will go over sending the donor match kits to the brothers. I think she mentioned they will also be looking at the donor bank but I wasn’t clear whether that was simultaneous to getting the brothers test or after. Also, they want to go over transplant requirements such as a caregiver etc.
I’m heading out to the gym and then B has to get platelets so I’ll just hang out after the gym. I do need to go into Safeway for some chicken I want to make for dinner. I wanted to go to Target and get an ironing board but I think I’ll postpone that.
I dropped off a load at Goodwill the other day that included a bunch of food stuff for the local food bank. I’m noticing that each time I go to Goodwill we really do have less and less to drop off. That is progress for sure. There are a few things I’m still considering giving away but not decided yet. One is the small table in the sunroom. Last year I had plants on it but this year I just put them in the greenhouse so the table top is clear. It’s a nice midcentury looking table I bought at Target a number of years ago so it’s not vintage or anything, so I’d be ok with it going. But if it’s useful(still to be determined) I’ll keep it.
Well, off then to lift weights:)
Things are definitely looking up.
We got a hold of SDI (EDD) again and it was like oh, sure, the dates are fine and we’ll mail out the debit card that has the benefits. So what ended up happening is they needed the date that UNFI was putting him on FML. So that was Jan 7. We will still need to use some PTO to cover the benefits and when that runs out which it will, we will have to pay with a check or whatever. I’m hoping that doesn’t happen at least for 12 weeks so we can get ready. But at least we are on our way.
Then B had a great day yesterday, very energetic so I’m hoping the labs tomorrow are promising. We will see.
Then we will need to set up some payments for the medical co-pays coming in. So far the first is $1400. I’ve decided to start a Go fund me for him to help us with bills and ALL the stuff that comes with chemo and when the transplant happens, that will be a lot of things, extra gas to get to Sacramento, food, lodging, and the list goes on. So we will see. I’m not sure how GoFund Me works so that will have to be figured out. When I looked at the page, it didn’t look so bad. I will link it when I get it done if anyone in the cyber world wants to donate.
The weather is quite nice and this weekend looks lovely with temperatures at almost 70 degrees.
Dinner is homemade pizza and a salad.
In a healthier time at Santa Barbara. His job was given to one of his co-workers. I’m definitely sad about it, but Barclay’s health is more important. And the next year will be tough and there’s no way he can do that job. Legally, they need to keep it for him while he is on Family Leave but that’s only for the 12 weeks. So what can you do? It is what it is.
It was 32 degrees this morning when I walked. Everything was frosty. B felt good enough to come along and it was a lovely romantic walk in the moonlight. Jupiter and Venus? are aligned and quite a sight. I think Mars was there too but not as bright.
Yesterday we drove to Sacramento for a follow up with the transplant doctor. It was an informative appt but there’s no real difference yet in numbers. But it’s still early in the cycle and it would be next week things could start to show something. For the actual transplant the hospital stay will be a month and then we will need to be in a hotel nearby as he will be having to visit the hospital daily for a month. Not sure how that’s all going to work out but when we talk with the nurse coordinator we will know more.
Today is a gym day and B gets labs. We’re still trying to figure out the SDI and we’re waiting on a call from HR. They have NOT been helpful so we need more info. Also tomorrow we will call EDD to see if we can get the claim going.
Tonight is Taco Tuesday and I’m making tamales not tacos but hey it’s Mexican.
My son started back at Sac State this morning. He’s still trying to get credit for his internship which would allow him to drop one class and make his load a little easier. My daughter has a day off due to MLK day she gets a comp day.
All in all, things are going along.
I have a dream.
I was raised mostly by my mother(absent alcoholic father) who was very racist. She really hated Puerto Ricans and blacks. Why?? I really have no idea. She was raised in NYC and went to Catholic schools.
I on the other hand at even an early age had a tremendous affinity for black people. When I was in high school, I think it was 11th grade, that summer I volunteered in a town called Newberg that had a program for “underprivileged black youth”. I remember just starting to drive and it was frankly a little scary. That year as well I was chosen as the class representative to meet a civil rights leader with my Social Studies teacher. Honestly, I have no memory of who that was but just remember the ride along.
Anyway, MLK JR. was a huge influence in my life. Later when I meet B and he was a Quaker and conscientious objector I was over the moon. ( and in Love)…
Well, right now we need some help in this country as was witnessed by those absolutely horrible teenagers taunting the Elder Native American. Those kids should be sent to a reservation to live and work for a year and find out what it’s really like to be a native person.
I walked this morning and B actually felt like walking too!!! Hurray!!! As soon as we were done though it started pouring rain. It was funny.
Today is supposed to be rainy but then the rest of the week looks lovely and in the mid-’60s. Yes, I can get outside. I am wanting to get out to the barn to go thru another bin of Life magazines. I think I’m just going to take most of the very early ones to the Cancer thrift. I have some of the ones in the 1930s. I love that life was so different and way simpler but also way more uninformed. News took a long time to get out. Now it’s instant. Anyway, I’m pretty sure my kids don’t want these ones so I think that will eliminate almost a whole bin. I have 4 bins left and I’d like to get it down to 2 by this summer. Other than reorganizing camping stuff the shelves out there look good.
B will need to give most of his samples away since he’s not on the road and won’t be again. The food bank always appreciates the organic and natural stuff. His job has been given to someone else so when he goes back it won’t be for that job. Does anyone know the law about that? Do they have to hold his job for him for x amount of months or not at all? Well, since we don’t know how long it’s going to be I guess it’s a moot point but still I’d like to know.
I’m off to the gym and then finish the bedroom zone. I want to wash the curtains this time around.
Dinner is spaghetti with a sauce I think. Brinner is an option too. So one or the other.
We made it through the storm but boy did the Sierra get a boatload of snow. I think it was over 2 feet and that’s a lot.
There was wind from around 8 pm to midnight and then just like that it turned off. Kinda weird. NO trees down but some branches and I don’t think it was over 25 MPH. There were some gusts but they were tolerable and we could sleep. There have been times in the past when the wind sounded like a freight train coming thru and that’s a big wind.
Today was busy. B had platelets and we had to deal with SDI first off. We got an email saying his benefits application had been denied. So, of course, we freaked out. We called and after a 30-minute wait explained what had happened. The person was helpful and I think we’ll be able to fix it. But the problem is with HR and how to use B’s sick leave and PTO. We really didn’t know what we were doing and actually still don’t but I hope we can figure it out next week. B spoke to HR today and she said you need to use PTO first over sick leave which is the exact opposite of what the SDI guy said so…… Also, she will look for the for EDD sent over 2 weeks ago stating what they will do. I hope by next week we can figure it out.
It’s quite scary since how will we pay stuff. The reason B is still working ( sorta obvious )is that we don’t have a lot of retirement built up. We still have a mortgage and a second.
But I think we will see it thru ok.
Then after his infusion, I took him home and took our 20-year-old van in for a smog and to pay DMV. So I first go to Speedee and their machine is down. Okay, I go to the next one Quick lube and because the car is over 20 years old their smog machine won’t work. So I go down to the next local one and its a-go but I did have to wait with every derelict this side of Sacramento( well it seemed that way). Geez, what can I say 2 of them didn’t have teeth. So finally 45 minutes later I’m on my way to AAA. It was all a PITA but it got done.
Tonight I’m just doing a small homemade pizza. I have dough from the freezer and I’ll just do sauce and cheese on top. B is still not eating but he is getting better and he says the mouth are sores are greatly improving. Yay!!!!
Well, off for now to watch some Vera or Poirot.
This is a rare weather prediction for the Sierras. Where we are in the foothills there is lots of rain BUT THERE WILL BE WINDS. High winds. Since we’re on the eastern side of the Sacramento Valley that is where the high wind warning is.
I’m not sure how I feel about this. In the past, we have booked into the Holiday Inn in Auburn and just left for the night. I’m not sure I want to do that this time unless it dire. The threat being 100-foot Ponderosa pines. But we have in recent years gotten thru without trees falling. And we have removed some. I’d say we still need to take down 6 more trees that are on the South side of the house and then in the back by the barn there is one of the biggest trees we have( probably 4 feet diameter at the bottom) that is leaning toward the barn but not the house. These winds have generally always come from the SSW so that’s where there are about 6 left. Some lean away and one leans towards. Of course, these trees have been around for at least 50 years maybe 100, but still, a gust of 60mph can do some damage. So I’m undecided. My anxiety probably will be the deciding factor. So if by 5 tonight or so if it’s just too much we can go. My daughter doesn’t want to go since her cat Ollie is not well and almost died yesterday. She has taken a floating holiday today. and she’ll probably need tomorrow too.
B has had a few days off from appts. How nice to just relax. Tomorrow he has labs and then if he needs an infusion it would be Friday.
I might go to the gym. I haven’t decided as my back is still bothering me from lifting something too heavy last week. I do have degenerative disc in some areas so it could be that. I’ll wait a week and see how it is. If it’s still bothering me I’ll ask for an x-ray.
I cleaned out the kitchen pantry this week and reorganized. I’m following along with ‘the minimalist kitchen’ by Faux Martha. Her blog is quite beautiful and her sponsor is OXO. So she has a huge following. I like her ideas and she seems very down to earth and not preachy. I really despise preachy. If you’re interested go to her website TheFauxmartha.com or YouTube put in Minimalist Kitchen. minimalist kitchen
Here’s an example of Henning Mankell’s writing:
” How do you survive?’ she asked.
“you get out of the house as fast as you can”.
“That’s not what I meant. How do you survive when you’ve lost everything you own?’
‘We need very little in order to live.’
‘But what about all the memories? The family heirlooms? The photograph albums? The floors you have always walked on, the wallpaper you have seen every day, the doors you have opened and closed?’
‘The most important memories are preserved in my mind. I can’t weep over the fact that everything is gone. I have to decide what to do. I have no intention of allowing the fire to steal my life.’
Honestly, his writing is brilliant. If you substitute fire for anything. Right now, I’d substitute this cancer.
A sunny day at last. Actually, yesterday was nice too. But rain/snow is forecast for the whole week. I guess we’ll get thru. But when the sun is out and it’s almost 60 degrees, I start to want to go out and do yard work, or garden. or get back out to the barn for more decluttering. But then it’s nice for a day and then back to 50 degrees or less and all that enthusiasm leaves. Oh well, it’ll all be there to get to.
Today is day 4 of chemo, so only one more for this round and then it’s a waiting game to see how the labs start doing. I suspect at least a week before anything maybe two. I have read some encouraging stories on the MDS facebook page. That does help. Plus I’ve asked a few questions and people are very helpful. That kind of support is really worth it and from my own experience with the Myeloma page and the Myeloma Beacon, they were literally life-saving and helped me move in the right direction.
Today is a gym day and then home to just do some chores before heading back in to get B. Today is a short day for him so that’s nice.
Dinner is pulled pork with corn tortillas. Scrambled eggs for B. His mouth sores he says are getting a tiny bit better.
This week is the bathroom zone. I was watching YouTube with The minimom who is in New Zealand. She’s quite cute with her zone cleaning but she said she uses some printouts from Etsy. I went and looked and am undecided if I need these. They’re only $4 but I’m not sure how much I’d use them. Basically, I have a planner( blank pages with a dot grid, I get at Michaels) and then each day write my goals and what I need to do. I also do a budget daily checking what’s out and what is due when. 98% of our bills are automatic but a few are still put in. So usually, I also do the next paycheck budget and adjust accordingly such as this next pay period I need to get the van smogged and pay registration. So, then I add that in.
Off to tidy up and then read.
Oh, I’m reading the last Henning Mankel book,’After the fire’. His writing is just amazing. It is so clear and precise. Yet, very poetic.