For some reason, I got a bee in my bonnet. so to speak, to clean out and paint our ONE closet. It is a good size, 4×6. I always wanted to make this a half bath with a small shower but that would mean digging up our septic and putting a bigger one in. That expensive just isn’t on the table anymore( unless we win the lottery, and since I don’t play, that’s not happening).
So we need to get a roller to do most of it. The Hardware store doesn’t open till 9am( here in town, not Home Depot). I have 1/2 a gallon of white and that may or may not be enough. We’ll start with the ceiling and then the clothes side. I’ll consider going into Home depot for more Behr paint or I’ll go tomorrow and finish the pantry side. Getting the clothes back in would take priority as they are on the bed and the couch right now.
If nothing else it will get the dust bunnies out and freshen up the space which hasn’t been done, like ever.
Also here are the mylar bags filled.
These are really nice bags if you’re interested. The came from TheEpicenter in Oregon. They have a zipped part as well as the normal heat part. I read it can be tricky to do the heat but I had no problem. The oxygen tabs in them should pull the oxygen out in 48 hours. Some are already showing that but others seem the same. No matter they are sealed. I already ordered another 20 bags since a few months ago you couldn’t even get these.
Tonight I ‘m making tofu burgers with macaroni salad. I need to go to the store and pick up some burger rolls later.
Tomorrow are my labs. It’s been 8 weeks so we’ll see what they show. As I said before Myeloma just doesn’t disappear so with my numbers increasing it’s a matter of time before I start Velcade and Dex.
Being off Facebook has been overall easy. Once in while I miss reading what people are up to but not a whole lot.
Off to paint!!!
Things are good this week with 2 doctor appointments down.
B had clinic on Tuesday and I drove him to UCD med center as it was an early appointment so there was traffic. He’s back on prednisone for a rash but it is minor and seems gone now. I sat in the car dealing with the financial fallout from the Cobra. What has happened is this: His group insurance ended as of 7/31 and that’s when we initiated the Cobra thinking at $700 a month that would take care of all the bills.
Ha!!! NOw UHC Cobra is still saying because he was Medicare ELIGIBLE they won’t cover the full costs. WTF????? Well, long story short, after numerous calls we are on the hook for the August appointments. I made payment arrangements while I was waiting for him to finish up at clinic. All his appointments from then on were covered by Medicare. But we still were paying the Cobra till actually just the end of last month( January). Not sure this was necessary but open enrollment hadn’t quite started so even though we could have signed him up with special circumstances, we just left the cobra in place.
All I can say is if you’re ever faced with losing group coverage and have to go on Cobra …DON”T. Overall, the cost factor doesn’t cut it or you need to absolutely clear what the cover. In our case, I just assumed everything was covered.
So then yesterday, I had to drive back down to Mercy cancer center for my appointment. It’s kinda what I thought he would say is yes, it’s going up but too soon to start treatment and to keep thinking of this as smoldering myeloma. So it’s watch and wait. That’s okay and when the time comes and my numbers are going up faster, I’m sure we will move ahead.
Today, I’m going to do some cooking. I’ve made hardboiled eggs and I’m going to make the olive and feta topping again. Plus I ‘going to grill some chicken for lunches and dinner. I think I’ll grill some onions while I’m at it.
I have some house chores to catch up on and then I’m going to hit the gym.
It is quite windy but clear here in Northern California. No rain on the horizon but the north wind is making it very cold.
The moon was big and bright to the west as we walked in the park. I only did 2 rounds as I wanted to get back to try and get on Recreation.gov to reserve Nevada Beach in August. I got back and on the computer by 7: 05 am and everything was gone. Oh well, I’ll check tomorrow.
My fractured rib area( old fracture, not new) has flared up again and is very painful so I am going to skip the gym and put Arnica on it. It started( about 2 weeks ago) when I had the very minor cold but I did cough and that always does it but yesterday I must have turned the wrong way and pulled the muscle. I think I first had this rib fracture after my first relapse in 2010 0r 2011. But last fall it acted up again and I went for an x-ray, so I know it’s not new but the old “chronic fracture area. Very bothersome and limiting which I hate. Unfortunate Myeloma does affect the bones and ribs are always a target. I’ve read of people having a bone spontaneously break and that must be awful.
This week is the bathroom zone so I’ll try and limp thru that. Other than that I’ll be home reading or just sitting.
I’m planning on making a mushroom ragu over polenta and a meat ragu for those that want it. I’ve been making the polenta in the Instant Pot and it works great for that if you’re interested.
We had a coyote come right next to the studio where my son sleeps and he got a chicken. It was at 3pm in the afternoon. Very bold coyote to do that. I’m thinking seriously we need a dog as dogs will keep coyotes away for the most part. This was very close to the house so that’s really bold and unsettling. I’m still undecided about getting new chicks this spring. I think I’d like to take a break with the chickens but then again they do a lot of work in the yard. Of course, if they’re out free-ranging there’s obviously the risk of coyote or fox.
It’s raining and I’m not walking and it’s 5:30 am. I haven’t bought the Frogg Toggs yet so I don’t have any rain gear. I guess I’ll get my ass in gear and do that this week as I don’t mind the rain as long as I’m covered up.
It hasn’t been a great week. I had some pain in my side last week and it turned out to be a mild case of diverticulitis. So now I’m stuck on antibiotics which wouldn’t be so bad but there’s 2 and one is one that is NO alcohol(wine for me) as it will give you a violent reaction. So not fun for me as I love my ritual of wine in the evening. Well, maybe change is good.
Then my CBC and CMP came in and they were all fine. Unfortunately, my Kappa light chains went up another 11 points to 55.7 and Lambda went down so that means the ratio went up( not good) to 5. 1. I’m not freaking out but it’s clearly not a good sign. Treatment is out there again the question would when is my doctor going to think it should start. He still seems to think my numbers too low. They are low and I don’t want to start Velcade soon but time is ticking and I don’t want to have fractures or let my numbers get too high. Granted they are still low as when I started treatment before they were over 1000mg/L. I guess it’s just wait and wait some more.
I did do quite a bit of house tidying this morning. I decided I needed to do something or I was going to go stir crazy. So I swished and swiped the bathroom, tidied my office area, mopped the kitchen floor and washed some of the entryway windows. I plan to go out and put on the gas heater and clean the sun porch.
Well, on that depressing note I’ll close.
I had a good doctor visit. As I mentioned, my numbers are going up (kappa light chains) but as he said it is slowly going up and I’m a long way to where I started out 3 1/2 years ago at 1010 mg/L kappa light chains. So I’m ok and not panicking. It went up 6 points to 31.7 so an increase. Lambda is in the normal range and looking back at my numbers, Lambda was always in the normal range. The ratio also increased to 2.66 from 2.33 so increase there too. When I went back to when I started Velcade my ratio at it’s highest was 68.25 mg/L so that says something about where I started.
All in all, I’m ok with it for now. It’s always weird to think cancer cells are in your body but one must be positive and philosophical at the same time.
We’re in for cooler temperatures which will be most welcome.
My daughter is drying some cherry tomatoes since we have so many and I really don’t want them to waste. Sundried tomatoes in the winter are nice additions to pasta.
Our last appt is Friday till next week. Driving to Sacramento has been awful with the traffic. Driving home has been a lot easier. I’m guessing with school starting and work there are more people on the freeway.
After next week, we are on a 2-week clinic schedule and that will be very nice.
Today is another trip to the hospital but before I go down I will try and do my Flylady zone.
It’s the bedroom so that is generally not too involved. I did call a house cleaning service to check on a ‘deep’ clean and I’d like an estimate. If it’s reasonable I’ll schedule that for the first week of June. Since sometime after that we will be down there at the RV spot( I hope).
There’s been a hiccup with that as the owner has had a medical issue come up. I sure hope it can be resolved but it is what it is. And his health comes first. We still have the ACS hotel as back up. We can’t book that though till we know the exact date, so it’s also hurry up and wait.
On another note, my labs came back and I’m not going to lie. It upset me. They went up 4 points out of normal range. 18.4 to 22.4. So 19. 6 is high normal. And the ration went up to 1.69 out of normal range. (1.68 is high normal). so there it is. I’m guessing I’m coming out of remission. I’m not going to worry too much yet as it’s still a long way to treatment. It could be 3-4 months maybe longer but clearly, myeloma cells are activating. It’s fine really. I knew it would happen and I’ve had 3 great years. Still, with everything going on it’ll be another trial. I actually see my oncologist this coming week( yes, I know in the middle of everything else) so I can ask him. He doesn’t get too concerned as the increases have been slow.
Anyway, life goes on, one way or another.
Our air quality is much better today. But Sacramento and even San Francisco are in hazardous air quality. Also, so many people still missing and I’m afraid they probably lost their lives in the fire. Very Sad. We are updating our emergency plans and have a bin with instructions ready to go. Honestly, you just don’t know if it could happen to you so better to be prepared.
My labs came back an myKappa light chains did go up 2 points 😦 to 16.1 and my Lambda down to 12.0 and the ratio went up to 1.34. All still in the normal range so I’m not going to sweat it but still there’s a tiny part of me that wants it stay lower. But it’s ok. It’s still well below normal (kappa is 19.1 and Lambda is 26.1) so it’s all good.
Today was a gym day so I can get back to my regular schedule after being sick those 4 days. I like to go Sunday,Tuesday, Thursday. So I will go Sunday and that puts me back on track.
I went to Safeway and got most of the rest of Thanksgiving stuff. I just need cottage cheese for the nut loaf and sour cream and probably some salad stuff next week.
Monday is my big day in court for my name change. I’m not worried about it. It’s only step one of the process to get the certified birth certificate from NY. I’ll start that paper work Thanksgiving weekend.
Tonight is a homemade pizza. I’m doing one with sausage and peppers and one with mushrooms and olives.
I just love this pinecone image.
What a strange couple of days it has been. I have taken most of it in stride but that doesn’t mean I’m not pissed off about it.
So first, on Tuesday I head down for my appointment with the Legal Help at the Santucci Justice system. I’m optimistic I’ll get the answers I need. So I get in and start explaining to the legal aid about my birth certificate etc. So I have booked marked where my questions are on the pages and …so this is where my birth name goes….yes….well and this is what it’s changing to…yes…. oh wait, I better go check on that. .. . !0 minutes later she returns and says the person upstairs’ says “you cannot change a name on a birth certificate except for adoption or paternity”…….Whoa, I say that is not correct. ….. Back up she goes with my paper work.Down she comes in 10 minutes no wiser. The lady behind me starts chiming in that yes, I can change my name but what are the legal implications for SS, drivers license etc. So I am at that point totally confused. They are both confused. So the one says, ” you better go see a lawyer” JFC*** Really? So I leave muttering under my breath.
So now, I’m just thinking about it. I can see changing the birth name. But how does that affect my other things? It shouldn’t. But I’d still like to talk to an attorney just to be sure. So I’m going to wait till next week and then see if I can get a consultation with one in Auburn. This is really turning into a 3 ring circus.
I went down to Sacramento for my oncology appointment. All looked good and I asked if I could do labs in 6 weeks and then in 6 more weeks and see him right after Christmas. I really didn’t need to go today but I felt obligated to keep the appointment. Plus I was dring the old van so that makes me a little nervous in all that traffic.
So then I’m talking to him about the patient portal. He says it looks like you haven’t signed up. So I say that I have. Hmmm, something is not right. So I get home sign in and it’s the same one I did sign up for but my records aren’t there except for 2015. Which is what I saw last week. So I decide to call the help number and finally after waiting 15 minutes, the rep says. Oh, that’s for hospital records( so in 2015 is when I had my sedated bone marrow biopsy). The other patient portal is for the doctor’s office. God damn, how come they didn’t know that at the office there. So now I need to call them and make sure it’s clear that there is a difference and I still want my labs. I still feel something is off about it but till I know more there’s nothing to do.
So overall, it’s kinda been a stressful week. Or at least weird.
We had incredible thunder and lightning and heavy rain last night. It was quite a show. The ground is saturated. But at least we won’t have to do anymore watering. Our bill went down to $99. But that’s still more than I’d like it to be in September.
Such good news!!!!
My kappa light chains went down almost 2 points.
Lambda light chains stayed just about the same.
The ratio went down to 1.18. The ratio is a very important piece of the whole equation.
So all in all, I am beyond thrilled. This is now month 25 after stopping Velcade.
It is so amazing and I am so grateful and happy.
Time to celebrate!!!
It was June 15, 2005, that I got the ‘official’ diagnosis over the phone. We knew, really before that, but it had to be official. The bone biopsy was done by a neurologist surgeon since it was on the spine. It was a pretty horrid experience. I didn’t feel anything but was conscious and I could feel the pressure. Well, anyway, 13 years ago and here I am doing pretty great( apart from the stress fracture in my foot) which is doing better in the boot thing.
Time gives one perspective on most things, and this is no different. I’m older, wiser, more informed than I was then. As I’ve said before, I didn’t really want to know much except what do we do now. It was later that I started getting all the info I could. Still, even the Myeloma Beacon didn’t come into being till 2009 maybe??? I learned so much from other Myeloma people and their experiences. Sadly, many of them are no longer here with us.
Life moves on no matter what. Death, sickness, political craziness(hopefully)will all change and move on to something else. It’s as it should be. It doesn’t make it easier or the pain any less, just different.
So, I lift a glass of sparkly and toast to me!!