Nothing much new here.

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We got back from our mini camping trip and the weather turned hot. We’re working on getting a new window and window cooler for the Studio(where our son sleeps and does school work),as it gets hotter than hell in there. The window just came into Home Depot so I’ll go pick it up this morning.

We bought the cooler the other day so B just needs to pop in the new window and then add the cooler. We have 3 in the house and they do work great and don’t add too much to the electric bill.

Today I’m off to see the PA about my foot problems. I googled it and it could be a stress fracture or some tendonitis. hmmm, not happy about this as it completely affects how fast I can walk and even just walking is a challenge on the first round.

We’ll see what he says. I saw this guy for the physical we needed for health insurance and I like his approach.

Since our doctor retired we don’t have a PCP, so I guess he’ll do.

My sister finished her chemo and her MRI and CT scan looked good. She probably still needs to do the radiation as Small cell carcinoma is very aggressive.  But I’m glad she’s got this time of remission. My brother will be flying back to Canton, Ct next week. I’m still not sure when I’ll go. Maybe the fall?

Other than that, not much new here.

Dinner is taco Tuesday something:)

 

 

Friday things…

Gee, this week has been kinda weird. It rained so much and was really depressing.  Today is sunny but rain is due back this evening. But next week looks glorious with our temperatures back to ‘normal’ which is high 60’s and even low 70’s. Yay!! maybe I can finally get out to the barn or at least the laundry which needs some help.

Our laundry room is attached to the back of our house. The drain water goes out to water plants.  We use an environmentally friendly soap so it’s good. Plus there are only ornamental plants out there. Also, my chest freezer is in the laundry room and some supplies. I also keep our emergency packs there. Some photo albums to take in an emergency are also in a bin.  The whole room needs a deep clean and I’d like to repaint the shelves.

It has to be warm enough to be out there, so maybe next week.

Update on my sister and her chemo for Single Cell Carcinoma is she is doing okay.  Has lost quite a bit of weight and her white blood count tanked. She also shaved her head so that’s always a bit traumatic. Nothing says cancer patient quicker than bald head:(

On another note of drama…. tomorrow we will meet a half sister that my mother gave up for adoption in 1967. Pretty weird stuff. I honestly don’t remember much but I do remember her telling she had a tumor( a lie) but of course, I knew she was pregnant. All I can say is WTF, you couldn’t have used fu#king birth control.??? My mother was a lapsed Catholic and I think she was in denial a lot of the time. Anyway, this half-sister was the result of the union with her then long-time partner.  The adoption papers were sealed for 50 years and then last January they were released and she found us.  Truthfully, I feel it was better left the way it was but then I wasn’t the adopted child.

She and her husband have flown out from New Jersey to meet my brother who in fact is her full brother. I am totally ambivalent about this meeting.  But, we will meet here at our house and then go out for dinner. My older sister has met with a number of times since she’s in Connecticut. Anyway, talk about a drama or a blast from the past.

I’m off to the gym today since yesterday you need a boat to go out. Then a few errands.

I’ve been doing yoga again and trying to be a little more flexible. Back in the day, I did a lot of yoga and could do all the poses. Now not so much. I wouldn’t dare try a headstand or the plough. The book I used in the 1970’s is Richard Hittlemans yoga. 

Friday night pizza!

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Cheese and pepperoni pizza with basil.

 

Very bad news :(

My sister is in the hospital recovering from a surgery where they removed part of her lung for lung cancer. They thought it was isolated in a nodule but the pathology just came back and its small cell carcinoma. Not good.

Her family is devastated as is her husband and me as well as my brother.

I’m looking into flights to Connecticut for March maybe April but probably sooner than later.

She has come out to visit me every year since my SCT in 2006. This is terminal for her even with chemo. And she can’t have the chemo till the surgery wounds heal and then it may be too late.

You just don’t know what life is going to throw at you so Live each day fully and lovingly.

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15th of December

Five things I learned from Chemotherapy.

Some things you just wish you didn’t ever have to go thru and Chemotherapy is certainly one of them.

But you don’t have a choice if you’re faced with cancer. Well, you do have a choice not to go thru chemo but more than likely it will end in death. Of course, there’s no guarantee even with chemotherapy but the odds are better.  But generally, with today’s amazing drugs the odds are pretty good.

so,

  1. Your world gets smaller. You really just don’t go out as much. Partly because you feel lousy but also you want to avoid crowds, germs etc. I remember sitting in the car while my husband would go into the store for a few things and I would look around at all the people coming an going and thought, “wow”, “it’s all so ‘normal’ for them.”
  2. You realize that most things aren’t that important. So you ran out of eggs, figure out something else to eat then. Oatmeal? Just an example.
  3. Time slows down and you just drift from appointment to appointment. Time definitely was different. I didn’t keep a schedule as such and it wasn’t till I found FlyLady that I started my routines.
  4. Normal things become a big deal, like taking a shower, or getting out of bed. It wasn’t till a year and a half after my SCT, that I realized, I wanted to be normal again. I am forever grateful to A.L that hired me as a Library helper and equally profoundly saddened that S. S., ended that 8 years later by not stepping up to the plate to library administration.  But life moves on.
  5. Your relationship to food, money, life, shifts and you realize life is just a fleeting moment and You learn to live in the Present. Even after being a meditator for 35 years, living in the moment with cancer taught me more, than all those years combined.  You just had to be in the moment no matter how you felt.

It’s a strange place to be but then life moves on and you get back into the rhythm of it all when you hit that wonderful moment of remission or for some people and actual cure.

Today was a gym day,( yes, I love routine).

Dinner is homemade pizza.image

Amazing!!!

eleanorroosevelt143006As a long term cancer survivor of multiple Myeloma, I have had my share of side effects, issues, fatigue, etc…yada ,yada ,yada… It’s not fun being on drugs/chemo for so long but one puts up with it because well,  we want to live. It’s kinda a no brainer. But one of the issues I have had really since my SCT is G I issues.  It really started about 3 years into Revlimid when I noticed I was going to the bathroom a lot. I didn’t really quite register( a little slow on the uptake here) that I was having diarrhea a lot. I know I kept mentioning it to my doctor but he didn’t seemed concerned or said take Immodium.  It started to get worse and I would need to go immediately after I ate and then I needed to know where bathrooms were etc. I didn’t go out to eat unless I felt sure I could get home in time. I figured this was something I had to live with.  I’m off Velcade and Dex now but I was still having the same issues.  Eat, bathroom…..not fun.  Then last week I read the Myeloma Beacons column by Tom Shell about issues he’s having and GI issues. I always enjoy these columns written by very good writers and interesting people.  But I also read all the comments since I learn SO MUCH from other people. Well, someone, Katie, mentioned a drug called Questran for diarrhea and I immediately was interested. I posted a comment to her about the drug etc, but it wasn’t published for some reason, so she didn’t get a chance to answer my couple of questions.  Well, I looked it up and read all the details especially about bile and after eating the release of certain enzymes. It sounded exactly like what I have.  I’m guessing this is a result of so many drugs over the years but also, I think my body is triggering this reaction.  Well, the uptake is I  e-messaged my doctor, who always is very responsive, and said could he order me a prescription for me to try since I’ll be going on vacation in August and I’m concerned about diarrhea.  He said it’s worth a try and did.

AMAZING!!!! I’m taking 1 teaspoon in the morning and I have had absolutely no diarrhea. I want to give a huge shout out to Katie who wrote that comment, because I am amazed.  I don’t to get too confident yet but today is day 6 and it is amazing to feel just a little more confident about going out to town or whatever. I am taking a very small dose and it’s doing the job.

If this has been an issue for you read what it says about the drug. It really described my condition totally.

Waiting and not good neutrophils.

Well, in cancer world , my absolute neutrophil count or ANC, has tanked to 667. Geez, if only it was 666. Then I could say it’s the Devils fault. Oh well, so, he said low but not too too low. ( low normal is 1500), so low. All my other blood work look great. Geez, do I really have cancer?? I just have to avoid people and not get sick if possible.

So, it’s just a waiting game to see if it’s worth it. My Spep test and free light chains won’t be in till Monday. So that’s the answer. If Pomalyst 4 mg worked and brought my monoclonial protein down then I’m on board for low ANC, but if not then Baby it’s time to move on to other things.

Up would be Krypolis a 2 day a week infusion. AHHH , that means sacramento 2 days a week . For 3 weeks, 12 days or 2 weeks off. I guess it’s back to feeling like a cancer patient. When you take a pill like I have for many years, it’s easy to just waltz in to the cancer center. No infusion room… It’s kinda weird but you feel like you’re a little out of the zone. Of course that’s not true, but that’s how I felt. So this will be different.

In other boring news, it’s a weird yellow sky outside due to a fire and really hot. One more day of 100 plus then a cool down!

The room my son left to go the studio is painted a pretty pale green and looks nice. My daughter will use this as her office for graduate studies .  The studio on the other hand is a mess, but I don’t have to see it. The whole , I mean, tiny house , has been a mess for a week. My nerves are shot looking at stacks of things. So, by this weekend hopefully it’ll be back to some sense of normal.

Sunday night chit chat

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  • Reading? The new Jack Reacher”A Wanted Man” , very good.
  • Listening to? We were listening to the wind.
  • Watching?later, Castle.
  • Cooking/Baking? Made the stuffed shells ,from the freezer cookbook, a big salad with blue cheese dressing.
  • Happy you accomplished this week?alot with my new freezer cookbook.
  • Looking forward to next week? I have next Saturday off, so I’ll go to the farmers market!
  • Thankful for today? My 2 great kids, my cancer is stable, and my husband.
  • *Bonus Question* Do you like your name? Would you change it if you could?
  • I’ve always liked Anne or Annie.