New brighton state beach

Well, it is pretty spectacular here. Around 75. NBSB is in Capitola , which is around 5 miles from Santa Cruz. We actually like Capitola better although Santa Cruz is fun and we may take the bikes there tomorrow as they have the beach trail that goes for almost 10 miles. Of course, I can’t do that but I could maybe do 3-4.

We went the best bakery ever called Gayles. If you are in Capitola ,don’t miss it. It is divine. Then target for a outside table and then the Nob Hill grocery store. Lots of fun. We’re going to walk down to the ocean in a while. This camp ground sits on the bluffs , so the beach is down.

image imageI’ll try and get some pictures off my iPhone. I start my new drug on Friday so I’m glad im here today. Still have some sort of IBS kinda thing. Not sure what it is but I’ll have to ask the doctor is it related to ? My gastro issues have been a problem all along but this is slightly different with no warning I need to go. Anyone know if this is Irratile bowel syndrome . It is odd and I hope it’s just a phase.

Well, on a happier note wine and cheese before dinner.

A new week!

image image imageThis should be fun week for the most part. Today I’m off and doing flylady stuff, and continuing tidying up after the painting. The ‘porch/office/entryway is done. We ended up not doing the ceiling since we ran out of primer, but the pine still looks good. I simply love the ‘simply white’ paint. Everything looks clean and bright. Plus, we ordered a smaller pantry unit from Costco on line. It’s basically the same one as we had but only 3 feet wide and we’ve moved it in the kitchen. So it all looks great. We moved the Heywood with my Tepco in our dining area. I’ll post some pictures.

then Tuesday I work till 1 and then we leave for new brighton beach with the tent trailer. The weather should be beautiful. I’m not packing a lot of food stuff because we’ve learned it’s just easier to hit the grocery store where we go, and Santa Cruz has trader joes plus other great bakeries.

We’ll be gone till Friday so nice. Then I start pomalyst on Friday so not fun. I’m always a little freaked at starting something new, but since it’s similar to revlimid ,I hope it’s ok. Then my Dex will be back at 20 mg so not fun but, I’ll just have to get thru.

I’ll try and add the pictures today.

Dr. appt day

I’m off to see my oncologist this morning. It’s a later morning appt ( which I don’t like) but today it’ll be fine.

My labs came back with low WBC , low RBC, slightly low neutrophils, so all that adds up to being tired a lot. Plus, the not so good news is my kappa light chains jumped up, so definetly not good. The ratio though is 59% between kappa and Lamba so, still below the 100 mark . But that it’s going up is a concern, plus I seem to be having more aches in my ribs and that right leg. I don’t want an MRI now but if it continues I will need to make sure there aren’t lesions ready to cause a fracture. I called UCSF about the specialist Dr. Wolf. It’s a lot of sending records etc, and too much for me but I will ask my doctor to do it, I think.

I’d like to change my treatment since I don’t feel the revlimid is really helping the KLC , but I’ll see what he says today. I’ll do an update later.

on other fronts, I called to make arrangements for payments on the $2000 co pay, so that’s set up, but more bad news is the doctor who did the bmb will still bill me. So more bills will show up. What a bummer and really how do we handle this.

I’m definetly depressed by it all but what can you do. I guess next time, I’ll suffer thru the office one.

On a happier note, the kitchen is all painted, we moved the pantry shelves, and now I started the primer in the other front area. I can only do so much, so I’m hoping my husband can finish the primer this weekend and then I can start the ‘simply white’ in there. It looks good even the little I did. I think  I’m going to check ikea for stools with backs. I use a wooden one with no back. It’s fine for a while then gets hard to sit at.;

I’m pretty sure I can find something inexpensive at IKEA. It’s so great to paint and clean up areas. I don’t have a lot to declutter, just freshening up.

Well, I’ll update later.

update

it it all went pretty good! We’re going to switch to pomalyst. So I have to fill out the paper and sign.

Hopefully, not much different than revlimid. But hopefully drops those light chains. He still reiterated that we could keep going on rev, and go back to 20 mg dex, and just keep watching. But, I feel it’s time to get at this.

He said fine with Dr. Wolf referral and I said I wait till next month.

Saturday stuff

well, it’s easter tomorrow and we are suppose to have rain. Yeah we need it. Although it’s suppose to becolder which I don’t like.  But we really need the rain so…

I’m hoping the kitchen gets painted at least the first coat. Things like the refrigerator need to be moved so it’s a big job. But we need to freshen it up. I’m loving the white and when we can get some new appliances it’ll be nice.

On the budget front, we just got the hospital bill for the outpatient BMB under sedation. It’s a  shocker really.  I guess I didn’t figure it would be the 20% copay or maybe they didn’t  tell us. But we owe almost $2000. Yikes, what about in the future when I need this again or other tests. How are we goin

g to pay for these.  My LLS grant doesn’t cover any tests or diagnostics so that’s out. At least for this I’ll ask for payments but that’s only a short term solution. What about in the future when even that might be too much.

The library was slow. An old friend stopped in to get books. I try not to talk to her too much but today I was rattling on about retirement stuff and it hindsight I was too outspoken. So I guess I’ll back off and keep my mouth shut. I’m always putting my foot in my mouth about something or other. I hope no one was listening .

She’s a nice person and our daughters are the same age, just different paths at this point. But I feel a little bad I was too mouthy. Not toward her at all just in general about things.

Well, live and learn all the time.