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!!
Friday came and went too quickly.
I had a plant disaster, where a plant that was is too small a pot and had some long growth on it, caught on my leg and fell not once but twice. It dumped dirt all over the floor but the second time was worst as it fell into my file crate. It took 2 vacuum bags to clean up and really set my day off to a frustrating start.
It was my goal to do a “Five Things Friday” but somehow it just got away from me. After my morning walk and house chores, I went to the gym. I got there right before 10am and that’s one of the busier times. There were people on all the machines and the classes were in full swing. Somehow I was able to find an empty treadmill and did around 18 minutes while watching some of the nightly shows. After I finished, I did my normal weight routine. After my workout, I felt like this.
After the gym, I went to the pharmacy, and my prescription wasn’t there. So then I had to call down to the Cancer Center to find out where it was sent. After talking to the nice receptionist, she said it was at my Auburn pharmacy. But since it wasn’t there yet, I said just send it to Optum RX as they will be the ones to refill it anyway. I was somewhat annoyed but just went with it. But I was going to go to Goodwill and Home Depot but I just gave up on doing anything else and came home.
The town seemed so busy so I just gave up on doing anything else.
I made a nice mushroom onion quiche for dinner.
I worked out in the garden a while clipping lemon balm, catnip, and oregano. They just grow so big and all over.
BTW, yesterdays doctor appointment went well. For you myeloma people, he said the new non -live shingles vaccine is a go. Plus the new bone strengthener, XGEVA, is now available and is an injection not, an infusion. So that’s all good news. Plus, I don’t need to see him again till August. Yay!! I’ll still get my blood work every 7 weeks or so. I’m too nervous a person to wait a full 10-12 weeks.