Monthly Archives: December 2018

Looking back at 2018

Posted in camping, cancer, Lake tahoe, Uncategorized by

It really was a wonderful year with my remission still present. It’s been now, 2 1/2 years since my last Velcade treatment. I’m cautiously optimistic about my numbers in the next 6 months or at least I know that in the past my numbers don’t just skyrocket so that is reassuring. If something starts changing I will have months to prepare mentally and emotionally.

We had numerous wonderful trips.

Our annual Lake Tahoe trip was just wonderful in September. Going up to the north coast with B for work was also nice. We hit Santa Barbara back in the very beginning of the year too. I do love Santa Barbara to visit.

My sister had a rough year with her cancer treatment but is now cleared and is doing well.  She, of course, couldn’t visit this year and we did miss her.

My daughter was promoted to full-time Youth Services Librarian so we are very proud.

Our son is in his last year and now last semester of college and is working very hard. He was traveling to Sac State from here 4 days a week and that is over an hour commute when the traffic is good. We’re proud of him for being so diligent.

Then the world crashed down on November 19 with B being diagnosed ( after the 19th, more like Dec 1) with MDS high risk. What a shock and it has sent us spiraling into the world of doctors again. For people like us, who rarely see a doctor unless it’s needed it’s all very weird. Of course, I do my routing labs etc, but on the whole, it has never been something we do because we’ve always been so healthy. This has been a shock, to say the least.

The future seems uncertain and we must just go forward bravely.

What else can you do??

Simple Sunday

Posted in Blood test, budgeting, cancer, MDS, Uncategorized by

It’s quiet here. We’ve been to the infusion center for B’s platelets so that’s good. He’s having quite a bit of trouble with mouth sores which we think was from a certain antibiotic, not the chemo. But still it’s uncomfortable and it’s going to take a bit to heal with his WBC so low.  He’s on a different antibiotic so hopefully, that will kick in soon.

Other than that, I went to the gym for a short workout.

I’ve been in the living room zone as that is only today and tomorrow. Then the next zone starts on the 1st, which would be the entryway, dining room and something else.

Since our table is in our living room I do that area when I do the LR zone.  I’m doing a bit deeper clean( wiping all shelves and baseboards) since it’s the first of the year.

I’m going to cook an organic turkey roast for dinner along with some stuffing and peas. Nothing fancy, just using up stuff from the freezer. In January, I’m doing a no spend month and freezer clean out. The no spend is just nothing other than food and essential things like cat food. I’ve spent quite a bit in December in foodstuff mainly because I went to Costco twice. I usually go to Costco once a month. So that was definitely more expensive.

This week I have a dental cleaning and B has his appts. If he spikes a fever with these mouth sores he needs to go the ER, so let’s hope he doesn’t. But if he did at least he would get intravenous antibiotic which would accelerate healing his mouth sores. Still, let’s hope not.

 

Wintery days

Posted in Blood test, books, cancer, cooking, Uncategorized by

It is very cold and windy here but the sky is bright blue. Very California-y winter day.

We had a lovely Christmas and although I was going for complete minimalism, that didn’t exactly happen. But I think it was just the right amount of gifts and they were lovely. I received some new silicone spatulas( much needed), the DVD of Gone with the Wind, of course, the Vita-mix which I am absolutely loving and a Vitamix cookbook plus Ina Garten’s new cookbook too.

Gone with the wind by Margaret Mitchell was a book that shaped my outlook on life as an 11-year-old. Not the racist part of slave owners but the struggle to keep what was of value.  I was telling my children, that we actually went to NYC to see the movie at Radio City Music Hall. At least I think it was RCMH, not completely sure.  I must have read the book 10 times growing u along with A Tree Grows in Brooklyn.  Both were huge influences on me.

Anyway, then we had a great lasagna, cheese manicotti, a salad, and bread.  B is not drinking any alcohol with his treatment stuff so my daughter and I shared a nice chardonnay.

His numbers have been tanking and it’s mostly due to the chemo which is good that it’s working but until the good cells out do the bad ones, he will need more transfusions, unfortunately.

 

I drove down to Sacramento for my oncology appt and traffic was practically nonexistent and I made it in record time. All my labs are normal so I’ll see him again at the end of February. He was informative about MDS and did encourage us to have the brothers checked for being a possible donor. He said it’s a simple blood test to check that first. It will give B the best chance of success if one of them is a match. I guess we will swallow our pride and ask although I said that doesn’t mean I want to have them in my life. So we shall see.

It also appears the best route for working is not working and going on disability so we will do that next week.  At first, I thought B could work between appts but there is no letting up right now with needing transfusions and platelets. Plus he can’t risk being around anyone who might be sick.  So hopefully it goes quickly and smoothly which I think will happen.

Tonight I’m making a spinach soup using the Vitamix and it came out silky smooth. The recipe is one of made many times from the mystery cater stories by Diane Mott Davidson. I tell you, if you’ve thought about one and are undecided, I can tell you it is really amazing. Plus I’m baking potatoes and 2 small pieces of wild Alaskan sockeye salmon.

The tree is down and the ornaments away. The little live tree I’ll have B move this weekend as he will need the dolly to move it.  So, the house is back to it’s clean and tidy self.

Have a wonderful Christmas!

Posted in cooking, simple foods, Uncategorized by

I hope everyone has a lovely and special Christmas.

We are all ready for Christmas and tonight is Christmas Eve and we will have our traditional cheese fondue with baguette, veggies, and maybe some ham for the meat eaters.

I made the sauce for the manicotti yesterday so all I need to do is assemble the dish and pop in the oven tomorrow.

Today should be low key. I will do a little Flylady zone cleaning and a quick vacuum.

The other day after infusion, we went to the nursery and bought a live tree.  For some reason, I just had this urge to buy a real tree and I knew I didn’t want to get a cut one. So off we went and found a IMG_0576.jpeglovely blue spruce that we will plant after Christmas. They are a slow grower so we shouldn’t have to worry about it getting too big. I really wanted a tree with a strong fragrance like a balsam or Frasier but none to be found in this part of the world.

Next year we will get that Christmas tree permit early like we did last year as they sell out within a week. $10 for a tree is unheard of.

I might go to the gym, haven’t decided yet. The day feels slow and open to possibilities.

IMG_0579.jpeg

Two of my favorite things, wine, and beeswax candles. 🙂

Five on Friday or a few more…

Posted in Blood test, husband, MDS, Myeloma, Uncategorized by

It’s been a whirlwind week ending today with us being out ALL day at the Roseville Hospital for the port placement. Poor B, no water or food till after the procedure so that’ll be @ 3 pm. Plus, I get to drive in crazy Friday traffic down there which will NOT be fun.

Oh well, it’ll be over soon and then onwards…..Actually having the port will be wonderful as he won’t need peripheral IV’s.

Rain today but clearing for a few days. It’s wet and damp and chilly outside.

First, off this morning, I’ll take B to infusion for platelets. His platelets need to be over 50 so they can do the surgery. So actually we won’t know that till later.  Then I’m going to come home feed the dogs and give them some time out and then head back into town.

I have Christmas dinner all planned I just need some manicotti noodles for the manicotti.  Plus a baguette for garlic bread.

We’re still trying to figure out if B will continue on PTO or what.  He’s officially off till new years but after that is the decision to work some from home and do some local stuff or keep putting in for the PTO.  Honestly, it’s a tough choice.  Work would help give him some focus but then there’s also a lot of stress with labs, infusions and then the next chemo session will be January 10.  So, I guess the best thing is to keep filtering the information and then make a decision by January 1st.

Dinner is a complete unknown as we’ll be home later. We had a pizza lunch the other day so I wouldn’t buy a pizza. Maybe spaghetti???? I’ll think about it later.

Our son is down in Yosemite till tomorrow but with the government shut down possible they will close the park. So I’ll need to text him as to whether they should leave today.

 

Oh, great news for my labs…

kappa light chains 15.5

lambda light chains 12.3

ratio  1.26

 

so Hurray, one less thing to worry about right now.

 

 

 

 

 

It’s official….MDS high risk

Posted in Blood test, bread, Uncategorized by

So it was the local medical oncologist that had the biopsy results from the other Dr. The official diagnosis is Myelodysplastic syndrome high risk because of the 7q deletion.

So at least he doesn’t need to do the induction in the hospital if it was leukemia. I guess that’s something.

For now, it’s going to be the 5 days of chemo every 28 days. Hopefully, the drugs kill off the ‘blasts’ or baby leukemia cells which are bad and then his bone marrow will start producing the right cells. Also, that will mean less and fewer transfusions and platelets.  Then it will be a donor transplant. I seem to recall the transplant doctor saying hospital time a few weeks then outpatient. Fingers crossed that it works as there is a 50% chance it won’t and he’ll die. Or he’ll need to go back on some sort of treatment. 😦

Today, after he gets platelets which do go very quickly after the IV is in, we’re going to Costco so I can load up on organic greens for those smoothies and fruit. I really hate going this time of year with Christmas, but I also hate spending a lot of money on greens at the store when can get a big bag at Costco for the same price if not cheaper.  I will get some other things as well since we’re there and call it my weekly shopping.

I’ve got a new sourdough recipe I’m trying out and it’s on its second rise. But we’ll be gone for a few hours so It’ll be longer than usual.

I’m going over to the gym for a tiny bit while he’s at the infusion center. I can probably get a good 30 minutes in.

Some of my labs are in but this new patient portal is a PITA as it says results released in a few days( it gives the date). WTF, there my results and he’s viewed them so why??? I didn’t see the big 2 tests SPEP or Light chains but they will be coming in soon I suspect.

Oh well, if it goes up again, I’ll just have to not flip out and go with it. Fortunately, I’m not high risk and my numbers have never just shot up so that would give me time to adjust. I see my doctor next week right after Christmas.

I haven’t been too inspired with cooking dinners so we’ll see what I feel like tonight. Mostly I’ve done just what’s easy without a lot of thought. Last night was pinto beans, a frozen enchilada and TJ’s cheese tamales.

 

 

Still in a holding pattern……

Posted in Blood test, cooking, Uncategorized by

No news yet, but I imagine it will be in the next day or two.

B just had his last infusion today and it went very well. We’ve had so many appts though it’s hard to keep up. Tomorrow is the medical oncologist  and then he’ll know if he needs another transfusion. It looks like he’ll be getting a port on Friday so that’s going to be almost all day. Oh well, we will get thru this one way or the other.

I had my labs this morning so I’ll be getting my results by Thursday.

I ran some errands this morning including going to the bank and I used their Coinstar to do our annual sealed pot of change. It was Sue over in Wales that stated this on her blog. She doesn’t have that blog anymore but I did always enjoy her stories. The idea is you put all your change in a jar for a year and then cash it in and use that for something.  I think we’ll just save it for something special when we can travel again.  I’m hoping B can do some short trips once this drug kicks in. (fingers crossed).

I went into Goodwill and got a small stainless steel bowl to put water in for the wood stove. I kinda was looking for something cast iron but that was probably a long shot. So I added some cinnamon sticks, cloves and orange essential oil to the water. The bowl was $2.19.

I also took B’s Santa Fe to the car wash. I need to do my VW next as it is really dirty.

Last night I made a crock pot chicken with mushrooms and then at the end you top with swiss cheese and bacon crumbles. It was delicious.

IMG_0568.jpeg

Then and early Christmas present to myself was these really cool La Parfait jars. A vlogger I follow uses these for all sorts of things and I really like the look.

IMG_0575.jpeg

I did carrots, olives, and the top one is left over cream cheese. I’m definitely ordering the next size up for other things.  I love the look of food in jars like this.

I’ve also been putting together glass type bento boxes for B when he’s in the infusion center.

IMG_0574.jpeg

Mostly some cottage cheese, apple slices, olives, and nuts. This way he can eat something while there.

This week the Flylady zone is the bathroom. Since out bathroom is so small it doesn’t take long to do the whole thing even wiping all the shelves, and doing the window.  I’ve had a heck of a time getting the right shower curtains though. Target has had some great liners we’ve used in the past but they’ve discontinued them so I bought another kind that was similar but they just weren’t drying.  So then I went and bought clear plastic liners to go on the inside of these but it was all too heavy and kinda claustrophobic. So I went back yesterday and spent 20 minutes looking at my choices and finally got a liner that is light weight. I think it will do the trick. I still need to trim the bottom as they hang down in the tub to much and then would just stay wet. Our tub is an old , very old clawfoot tub we put in when we first moved in. So the shower curtain rod is a ring around the top. So I always need 2 curtains or liners.  When we remodel the bathroom next year the big decision is the tub going??? It’s a big step up into the tub which is doable now but age has a way of catching up to us.

Anyway…….

Tonight’s dinner is unknown, but I may do leftovers or something from the freezer.

 

 

Friday stuff

Posted in Blood test, cancer, Uncategorized by

No news on the second biopsy but it will be next week so then we’ll know the exact diagnosis. B is doing well and trying to adjust to this new normal of craziness. We had to drive to Sacramento twice and out everyday for something or other.

He started the chemo yesterday because either way this is the drug he would start with. It’s 5 days every 28 days and seems to be well tolerated. So that’s a start.

We’ve had a few lunches out coming back from Sacto since it’s easier to get a bite instead of coming home starving. Nothing fancy, a burrito at our favorite local place and the other day I had a In and Out burger and he had fries and a shake. One thing for sure is he needs to up his caloric intake. He’s already underweight( has always been) but I don’t want it to decrease anymore.

I’ve made 2 Vitamix smoothies and WOW it was amazing. I did one with a knob of ginger and there wasn’t a stringy thing left. I think it will be a great addition. Right now it’s on the counter but I try not to keep much on the counters so I’ll have to see where it’s home is. Since I’ll be using it daily the counter seems like an obvious choice but I’ll see.

While he’s at infusion today, I’m going to the gym for 30 minutes. I wasn’t feeling great yesterday so I didn’t go. that would have been my normal Thursday workout.

I get my labs next week so we’ll see how that goes too. I guess it’s really insane the two of us with a blood cancer. yes, I’ve tried to think what could it be and all I can say is it’s the luck of the draw. We’ve never been exposed to any chemicals or worked with hazardous stuff. So , we’ll never know really.

Tonight is pizza night and we’ll order out. It’s just too much to think about making too much stuff right now.

Simple Sunday

Posted in cooking, Flylady, Uncategorized by

I’ve been thinking about the things that make my home cozy or Hygge.  One definite thing is burning beeswax tapers every evening at dinner. This is a throwback to our Waldorf days where they use beeswax candles, beeswax crayons etc as it is beautiful and natural.  These are the ones I use.

 Another thing is using fairy lights / twinkly lights year round.  I’m really into those strands of tiny led lights that are battery operated. I have 3-4 strands all over but the look especially nice in plants.UNADJUSTEDNONRAW_thumb_ed3.jpg

This picture doesn’t really capture how pretty it looks but you get the idea.

I’ll also put a pot of water on the wood stove and add cloves or orange or cinnamon. It smells good. Other wise I burn scented candles. Right now my favorite is the Anthropologie one that’s called Capri blue. I bought it on sale and it lasted a pretty long time. Generally, I don’t spend $24 on a candle but this was big and the scent really was delightful. I probably won’t buy another though as that’s out of my price range normally. But it was a nice Christmas present to myself:)

Tonight is the last night of Hanukkah and I’m making latkes again and I’ll roast  a chicken too.

Today is a gym day and then just tidying around the house what needs to be done. The coming week is the kitchen zone so I’ll do that tomorrow.

I’m done with Christmas stuff  so that’s good. For Christmas dinner, I’ve planned lasagna and manicotti ( vegetarian). The lasagna is done and in the freezer. Plus I’ll make an antipasto plate up and we’ll have some garlic bread too. We’re not dessert eaters at all, but I may get a lemon cake from our local bakery. Lemon cake is my absolute favorite.

Friday stuff

Posted in Uncategorized by

It was a cold walk this morning 37 degrees. But the stars were nice!!

B’s labs came back fairly stable with no need for platelets today. So, that means he’ll get another blood test on Monday. Except for the screwed up biopsy, Sutter Health has been really on top of things.

We did a Costco trip yesterday which is the last we will do till after Christmas. We opted to get the Vita mix on sale ( $70 off) as I will be making lots of protein and smoothie drinks for B to help with nutrition while he’s getting whatever treatment is set up. I think it will be valuable thing. Plus, I’ve wanted one for a while but it certainly wasn’t a ‘need’ per se but with the health/treatment issues I think it’ll be great.

Today is a gym day and then home.

I’m making homemade pizza tonight. One pepperoni and one veggie.