Monthly Archives: August 2015

Good news!

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Well, for the moment. My labs 8 days into this 4 mg of Pomalyst( that’s double what I was taking) are great. My neutrophils are 2668. Wow, I hope this cycle is the one that does the job. I still have another 10 days to go so it’s still kinda a waiting game. But at least that’s the good news.

We’re walking at 5:30 , still dark but gets light quickly. The just keep walking project is at 90 days into year 3. There’s still a few people who show up this early, and I try and stay out of their way. I mean it’s a big park do you need to walk right behind me:( .

Fall is definetly in the air. Cool evenings ,warm days. My son started his semester yesterday. And my daughter her online program as well. So back to school for them.

This week I’m going to Costco for mostly vegies and bread. ( too hot to make bread still)! But soon. Also, I think I’ll go with her to her work meeting on Thursday and I’ll hang out at the coffee shop. Not totally sure yet.

Still working on budget stuff with the roof and trees. We haven’t heard from either yet so I’m figuring this will all go into September.

Simple Sunday

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Apart from going out to a fancy lunch today at a winery for our anniversary, B is working on getting the roof ready for the new roof. he’s also going to put mud on the dry wall so I can paint the Kilnz this week. Then my daughter’s space should be all fixed up. we’re buying an Ikea closet so the space can be called a bedroom if we sell. Not much of a bedroom but still.

Also, we’ve decided to put out more money and have the two huge trees right next to house finally taken out , thats another $3500, but it really must be done. the one big tree is at least 3 feet wide and only 2 feet from the house. They will have to bring in a crane. I don’t plan on being here as my anxiety doesn’t do well with things like that.

Its a lot for us to be putting out and leaves our EF dwindled but i feel we need to do now. Maybe because my health issues this year have not been good, and i’m feeling a little pessimistic about it all. Who knows. but, this is the time to do this and I think its a right decision.

I hoping we can get the trees out within 2 weeks and then the roof would only be a two day turn around. Our roof is pretty easy overall to do.

Our Anniversary

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Today, August 23, we have been married 45 years. 1970 is a long time ago it seems. We had a simple Quaker wedding at a historic Quaker meeting house(highland Mills ,NY). We were married under the care of Cornwall Friends Meeting. We were way too young but believed in each other and our love. Quaker weddings are very simple no, minister, you each get up about half way thru the meeting and speak your vows. A large scroll is outside the door and as people leave they sign it and they are your witnesses to your marriage. I have ours framed and hanging in our house.

We had a very small reception with pot luck food, and a carrot cake, and lots of champagne. We drank a lot of champagne (too much for this young kid, and embarrassingly was pretty wasted. Somehow we made to the hotel. How anyone let us drive is a mystery to me. But hey this was 1970. They were probably just glad to see us go.

Off we went, in our 1964 VW bus, up thru Canada, down the Souls St. Marie and down to Tucson. B was a sophomore and I was a freshman. How we thought we were going to pay for college is really beyond me, but we had hope and dedication.

Tucson was an adjustment for me but I came tool the open sky and the desert.

We’ve had a wonderful life together, two wonderful children and being parents was one of and is still is our greatest joy. For me it is the one thing I know i accomplished well. I never had a career per say, never any real job, except he library, and now thats gone. So being a mother is the one greatest accomplishment of my life , except for always trying to be the best wife i knew how. That doesn’t mean we didn’t have our share of problems and issues. We just stuck together and worked things out.

Its been a wonderful life and now living with an incurable cancer I can really say “how great was this life”? pretty great.

I love you sweetie, now and forever!image

Minimalist wardrobe

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I started wearing only certain colors and combinations a few years ago after reading about ‘uniform’ or minimalistic clothing. I liked the idea, it made things nice and simple.. I wear either a black or white or navy v neck t shirt, jeans, and a shirt over. I almost always wear a light shirt in white or black over my t shirt as i often have bruises on my arms from my myeloma.( easily bruising is a symptom). I have  2 pairs of black jeans and a few white capri for summer. I occasionally wear a dark plum sweater in the winter. Since I live in California ,our winters are generally mild and I have North Face polar tech i wear when needed.

I decided to go thru the few clothes I own and really only keep what looks good on me. I got rid of 3 stained black t-shirts and it’ll probably end up giving away 4  jeans. since I don’t have a lot of clothes , I’m going to check out getting one nice pair of jeans at lands end and 2 pima cotton t shirts. First,  i’ll check good will, but that can be hit or miss.

Minimalism in my choice of clothes really works for me. I know what colors or rather what black and  white and navy plus, when I can find it dark purple, works in my minimalistic wardrobe.

I’m also going to try and find a pair of shoes besides keens that i can wear in the fall and winter. it has to be something with great support as i have feet with issues.

I went to the dentist to have him check the splint. everything looks good and I’ll be just waiting for the Invisalign ,which will  take a few more weeks.

i enjoyed an ice tea out at Starbucks and used my mac air while there.

I’m making homemade pizza for my daughter and me tonight.

Friday updates, budget, dental….

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I got the clear splint on Tuesday and it’s pretty good. He took impressions for the Invisalign so that will be in @ 3 weeks he said. He didn’t say wether my jaw is back in place but my mouth opens ok although not super wide. I never open it wide anyway due to the jaw locking. So I don’t know. The splint definitely is moving my jaw forward which is what he wants. I called the insurance yesterday and there is a provision for TMJ  so I’m hopeful they’ll pay something toward the $6000. I called the dental office back, and they’re going to call and find out what they need to do. So that’s potentially good news.

My doctor appointment went well. He seems to think we should try the full dose of pomalyst and then evaluate. I’m okay with that but a little nervous about it dropping my WBC low. But I start tonight so we’ll see. Plus I’ll get a blood test next Friday, a week in, to see if they’re going to low. I’d love this to work as its much easier to take a pill than drive 50 minutes for a shot and IV . But for now this is it.

we committed to the roof but want to wait till September 1st or so. I think it’s smart to do since the roof is 20 years old.

Budget wise, it’s okay. I paid off one of the medical from the bone marrow biopsy, and have more to pay on the bigger one. I went to Safeway the other day for bagels as that’s all my son wants for breakfast ,oh and he wanted cold cereal, and ended up spending $90. Actually I thought that was pretty good. I haven’t been shopping too much since my dental stuff but now I will. Our water and electric are down from last year so that’s good. I’m not saving much but am throwing some extra into santa fund and I can use that extra for property tax which comes out in November. With the santa fund you can’t get it till then so kinda a good idea. Still working on retirement numbers, but a lot depends on will my daughter help pay the mortgage at that time. She’s probably planning on staying here unless a full time library job opens up after she finishes her MLS. If she paid some, I think we would be able to swing it. In October we finish the modified loan from Obama ‘s HARP program . It’s been good but now the interest rate will go up some.

Overall, things are ok. I’m adjusting to not going to the library. I started to get some Life magazines on eBay and then stopped . It’s just too much of a pain. And I lose money on shipping because it’s hard to gauge it with magazines plus buying a mailer gets expensive. So I decided to just give to the goodwill. Someone will enjoy them. At one time ebay was so great, now it’s PITA.

its warm today around 99 so I’d better start closing some windows.image

The week ahead!

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Before I start with the week ahead, I thought I’d share a great story from my son. As I mentioned he turned 21 on August 7. I was almost 42 when I had him and was always the oldest mom in every class. Oh wait, I’m totally off topic. Anyway he loves Elton John, and has been to Las Vegas this year to see him, and then on August 8 went with a friend to Harvey’s in south Lake Tahoe ( about 2 hours away). So he had pretty good tickets his friend bought. They got their early to buy t shirts etc. so they’re sitting in their seats and this guy walks up and has an Elton John t shirt on but nothing that looked official. Anyway he asked if they like Elton john(dah why would they be there), anyhow, he says well ” Elton John has two tickets in the front row for you”. OMG, my son was center row, first row in front. He was over the moon. How’s that for good karma!!!

So, onward to this week. I’ll be seeing the dentis tomorrow to have him make a smaller splint. This thing has been absolutely awful and its been a crappy week with not really cooking etc. I’m going to tell him , figure this out because, 1. I can’t eat, 2. I can’t  talk, and I need this done for now.

Then Wedneday, I’m in sacramento to see Dr. Laptalo and figure out with my not so great blood test results, what we’re going to do. Unfortunately my husband who in 10 years has only missed 2 appointments with me is doing a store reset in Ukiah. So I’m going alone. I don’t mind that it’s just this wil be an important appointment.

My daughters house sitting in Truckee and I’m happy that she has a chance to see how it is to only commute 10 minutes instead of an hour. Plus winter in Truckee is not easy.

So it’ll be an interesting week for sure. We got the bid on the roof and it’s looking like $8,000. That starts cutting our EF close.. Scarey for me.

Well, that’s it for now, back to reading and I still need to mop the kitchen floor today.

Feeling better!

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Well, I’m doing better. Today is my dear sons 21st birthday. He’s a great young man. He’s going to a junior college( last semester), and works 2 jobs. He does like to spend money though LOL.

I’m eating  soup, potatoes and yogurt.and anything else that doesn’t require chewing. When I see him next, I’ll say “no more”,give me splint that I can at least eat with. Also, nothing feels different, so it’s probably not working. But we’ll see on Tuesday.

I’m formulating questions for the doctor visit so I’m prepared. It makes me feel better to be prepared. I really don’t know what to expect and that makes me a little nervous. But I’m completely confident he’ll know what is the next step.

so all in all, I feel better. Still a little depressed but not too much. This too will pass.

I have a bunch more tomatoes to process, so far I’ve gotten 6 bags frozen. I’m not doig too much with zucchini, I think I’ve had enough,Ha Ha!!

Our budget is completely blown or rather our EF. We are going to get a new roof. Our roof is 20 years old, and if we’re going to sell in 4 years it needs to be done. It’s a huge expense. Honestly, I’m not sure in retirement we’ll be able to cover these costs.  I guess we will cross that bridge when we get there.

Right now, we’ve got a lot going on, the roof, redoing a room with some sheet rock, my cancer trimageeatments up in the air, my TMJ issues that will include Invisalign . Wow. No wonder I’m depressed. So I’m going to find a good book and escape. Plus, declutter some.

Not great news

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Well, just called the nurse since my doctor is still on vacation, to get my labs. I’m really disappointed. My Absolute neutrophils are great 1980, but my m protein went up to .9, that’s a big jump for me and definitely not good. My kappa light chains went up slightly to 890. So, now what ? Obviously the  drug Pomalyst is not doing anything so, I guess we will have to discuss switching . Or maybe adding Velcade ? Geez, I don’t know. But having my monoclonial protein jump up scares me. So…

The SCCA doctor,Dr Caffey, suggested when these drugs stop working going to cyborg. I know that’s velcade, but not sure what else is in that combo.

So, I’m definitely concerned. Plus, now I have a disclocated jaw and am having to wear a splint. For a week to see if it’ll go back in on its own. Nothing feels different so I’m not sure it’s doing anything except keeping me from eating. Liquids are ok but not much else.

Plus it’s bulky and hard to talk even.

Talk about depressed. Oh, well , we’ll see what he says next week. Actually both doctors. Not fun😞

Summertime…

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I haven’t done a whole lot sinc we got back from camping. It was pretty hot and I sorta just wilt. I’m making a nice summer minestrone with garden vegies for dinner. Maybe add some bread , I’d have to buy a baguette and I’m not sure I’m going into a store.

I have to get printer ink and post it things at staples. Then I wanted to maybe do a few errands around town.

We went and looked at a few xtra light trailers. Found one we both love, but, we decided we really need to do a roof this year, so I think trailer dreams are on hold.

Dropped some squash off at the library for someone and a person( I knoiw), from the main branch was working. Hummm. They have no extra help, but they let me go. ????

stuff was moved around in there again as per the BR M mania for moving things. I didn’t think it looked good. I didn’t check anything out and just left.

Well, off to flylady a little and then town.