It is still really hot and even going to be hotter. 106 is predicted for Wednesday. This is a long spell for it to be so hot. We usually have a week or two of hot but this has been ongoing. Did i say I hate the heat. I don’t do a lot and it seems to just suck the energy out of me.
A couple of this I wanted to mention. Ive got the ball rolling for my second option in Seattle. Everyone on the Myeloma beacon(well, almost) says see a specialist. Well, where I live Sacramento does not have one and we live almost an hour away from downtown where I see my doctor. So, its either UCSF or Stanford. In all honesty, i haven’t felt the need to see a specialist until now. Mostly because everything Ive learned from so many people and sources I know most of what DR. L has done is right up with doing what I need. But now that I’m off Revlimid and on to Pomalsyt, I’m a little nervous. I’d like to be sure I have someone else to check with if Pomalyst doesn’t work. I’m still confident it is but next cycle will tell.
So, when I first called UCSF about seeing Dr. Wolf , the lady was quite unhelpful and unfriendly. She made it sound like a lot of work to see him etc. So, I kinda dropped it. But then I decided to call Seattle cancer center about seeing Dr.LIbby. I have always like his response on the Myeloma Beacon. the lady was friendly, helpful and we started the process.
So, the other day she emails me that Mercy cancer was not getting back to her and even gave her a wrong fax #. So, I called and talked with the young lady that is at the front desk. She was very nice and then said was I moving to Seattle and hence the privacy release form. I said no just a second opinion. So she said oh thats easy just have her called me no release is necessary since its a second opinion. So, what I’m trying to get at. If I’d known this I would have done all this way sooner.
So if you’re looking for a second opinion call all the parties to see what needs to be done, it could be easier than not.
I’m off today to drop eggs off to friend, then I guess I need my annual thyroid test as I got a notice. So, I hate to get 2 blood draws this week but it needs to be done. Wednesday I’ll get my blood panel and hopefully my neutrophils are up enough to stat the Pom.
Oh, our JKWP is on Year 3 day 31.
It is very hot. Today 100, tomorrow a 101. then a little break of 93, then all next week close or at 100 degrees. I do not like the heat. I feel like the air is suffocating. UGH…
The doctor visit was good even if he was an hour late. Good thing we don’t schedule anything else. He did say, after I asked him, that to up the dose of Pomalyst will make my neutrophils go even lower. So, obviously thats not good. I also told him I was hoping to get an appt with Dr. Libby in Seattle. He didn’t say much about it. He did think since i’ve had a lot of chemo, the 3 targeted drug regime would be hard on my bone marrow. Not sure if down the road that will matter as, it’ll be do what we can. I’m even thinking of discussing another SCT but for me I think that would be a last resort. If Pomalsyt is too hard on me I will need to go to Velcade. So, on a positive note theres still options.
Well, on to news. YES… my kappa light chains went down over 200 points. very good. But my neutrophils need to come up before I start another cycle. Im really hoping by next Wednesday when I get a blood test. I guess we will see. I have felt a little off the last day or so, not sure what that is.???
Today is the coffee chat with Friends of the Applegate library. I’m going to go and see who shows up. Its also a book club day which I will not go to. Not so much as I don’t want to go the library as its going to be too hot to go out at 4pm.
B and I went to Trader Joes after the doctor appt. I will put that on July’s grocery bill. Everythings paid for the month, with just the water bill and Verizon still out.
Dinner is pita bread stuffed with spiced tofu, veggies and a blue cheese dressing fromTJ’s that i really like.
Well, its been a few weeks since my last time at the library. I miss it but life goes on. Im trying to be active around the house and doing a few projects. I need to get some primer at Home depot and paint a couple of walls we are going to be redoing this summer. Im keeping up on a load of laundry a day per Flylady. Menus planned for the week.
Tomorrow is Doctor day. I did get some of my blood work back and ,Yes, My neutrophils are down, but not as low as last time. But I’ll still have to get another blood test next Friday and see if they’re up to 1500. So, I have a lot of questions for him tomorrow, mainly, if pomalsyt isn’t working where do we go from here.??
I received all my paper work about unemployment only to be disappointed to have to cancel it as it says ,”am I available and able to work full-time.” Well, NO, duh… of course i can’t work full time with my medical issues. So, try calling EDD, it is impossible to speak to someone. Ive tried 2 days in a row and all it says is, there are too many people calling. Uhh, so what am I suppose to do. I may go into the local office , but Im not sure thats a good idea.
So, Im off to read, and see what the day brings. We’re getting some summer squash from he garden and I just saw a couple of zucchini . I make zucchini fritters that are really good. I top with a little sour cream or creme faiche and its yummy.
Well, surprise to the budget. Our septic needed emergency pumping. $500 later….. We had it done only 2 years ago, but happened is a very important piece at the top had not been replaced( actually it was not there)… so the septic wasn’t working right….. Well, I could say s#!!^t but that would to obvious. So, there goes $500 from my fall account. Thats ok , its done and we will get the part this time. Last time we didn’t do it so..
Its a cooler day today, but by Friday we will be hitting 101. I hate the heat, and the cold. I like it just in the middle. Well, we will enjoy today.
The kids are making waffles and scrambled eggs for Dad. Although since they’re both still sleeping I maybe doing it. I am going to make a greek pasta salad , and Bbq something. We have worked on eating down the freezer, but it didn’t seem to affect the grocery bill. I guessing its non food, like laundry stuff, razors, etc, that put us over this month. Especially since I got the razors and some other non food things from costco. There its not 3.95 for a razor ,its 26.95 for 14 and thats with the coupon. But at least I don’t have to think about it for a year.
This week is my doctor appt. I’m also expecting to hear from the Seattle cancer center about my appointment with Dr. Libby. Its going to cost us to fly up there, but i intuitively know now is the time to get a specialist on board. I will find out if the Pomalyst is doing anything. I don’t have a plan but, Im guessing he will up to the maximum dose of 4mg.
Yesterday I was really dragging so I’m also guessing my neutrophils have tanked. 😦
Im going to go to the used bookstore today, and then pop Raleys for spinach, mushrooms and whatever else I need.
I did apply for unemployment from my ‘dismissal ‘ at work. My daughter doesn’t think i’ll get it as I was extra help. Probably not but even a little would help.
I’m redoing our budget as I won’t be bringing in my little checks. They do amount to just under $400 a month , so I need to find that in the budget somewhere. Probably household where Home depot tends to suck money right out. Mostly its summer stuff and then fall projects. Everything else is set. Water varies and is higher in summer, but cell phone, electric etc are pretty much set amounts. Im still working on our big fail bills in one savings account, and after this next pay period I should have that done.
Then,I think I want to focus on adding an extra amount on B’s car. He gets a car allowance which we absolutely need, and it pays the car payment and gas. But if we could knock that out in 2 years we would be in better shape , as he’d still get the allowance but we could just save that money.
Food is always variable. I spend too much I think,but it doesn’t seem like a lot goes to waste. So, if I stick to menu planning groceries could go down by maybe a $100.
We did get slammed with the copay on my bone marrow biopsy. I should really complain. No one ever said it’d be 20% ,do thats actually a pretty big bill since the procedure was (get this , and don’t be shocked)..over $10,000. yes, folks, over 10 grand for one procedure. I will not do that again. I’ll suffer through in the doctors office and take atavain. So I have at least 3 months more of payments on that.
Well, I’m off. Blood test today, so results next week. I can’t say I feel any different, so I’m not sure how my kappa light chains are. But we’ll know next week.
Then my daughter wants to pop in to Kmart or Target for something.
Dinner is tacos.
Well, Im off to do some town chores. I need to go by the library and pick up some of my things( coffee mugs etc). i am going to mention to BR M why hasn’t she even texted me. ( of course , I know they’ve told her not to contact me. But I want to hear it from her.) Then I need to go get my prescriptions. Then a few groceries, bread, lettuce, and whatever else I think of. Maybe stop at Grocery Outlet. not sure.
I started adding in walking on the treadmill, and already after just 2 days my L 1 is flipped out (degenerative disc). So today, i only walked 25 minutes in the park and I might skip the treadmill. Im hoping to just increase my endurance sine I have the time (ha, ha)!!
Dinner might just be salad or I have so many eggs, maybe a breakfast dinner.
Im still debating about paying for Blue Host for a domain. Its 3.95 a month. Not sure what that gives me except the private domain. I’m not planing on monetizing anything. I really dislike blogs with ads and avoid them. So, I’ll keep thinking about it.
The third year of JKWP is now in day 20 , (I think). I have to go back and double check. We’re out pretty early as yesterday at 6 am it was like a freeway in the park. Not my style.
I’m pretty sure we all remember the day we got our official diagnosis. today is mine. the spring had been a horrible time of endless appointments, questions, and not really a lot of answers.
Finally, I was scheduled for a bone biopsy on the plasmacytoma. I’m not sure if they’d do that today or it was obviously myeloma. Funny though, I didn’t get any blood tests which would have confirmed it. The doctor doing this was only a back and pain doctor so he was way out of league. I of course was then referred to a oncologist.
Anyway, it doesn’t matter, it was today 10 years ago. Of course, i had the fracture a year and a half before so who know how long myeloma cells were in there. Id say at least 2.
Well, here I am. Everyday is truly a gift to be had. Whether its a good day or a lousy day its still a gift to be alive.