I Made It… 10 YEARS Ago Today I Was Diagnosed with Myeloma!

Hello 12.30.2019
Bye Bye 12.29.2019

Yes, Bye Bye to posting on the 9’s
Hello to posting on the 10’s

Yep, this girl made it to 10 years since my Myeloma diagnosis. Very surreal, still not able to fully absorb all this cancer nonsense, but it’s my life.

Yesterday was December 29, 2019, the last 9 of this year, and of this decade! Wow! How did that happen :))

I wasn’t feeling up to posting a post, as I’ve had a lousy head, chest cold for over a week. And as my bugs go, they start with a headache, which I often can’t differentiate from chemo side effects. Then the headache morphs into a sore throat. And from that, I know I’m a sickie. The sore throat then morphs into a bit of sneezing, and that morphs into my chest, with all the lovely coughing and hacking. Fortunately, it didn’t go deep, and I never had a fever. But the worst part for me is as a result of the muscular action of blowing and coughing, I pull chest and rib and shoulder and back muscles, often spraining or fracturing something along the way. If you’ve been reading my blog for years, you’ll remember my posts around this time of year, with awful muscle, nerve, bone pain. So here we go again, same story, different year.

As always, I never expect to have the things happen to me that they do, as they do, so I didn’t think I’d be suffering this long. Had this thing for almost 2 weeks now. The headcold part isn’t the worst, it’s the disabling muscular, nerve, bone pain, and non stop headache. So for the last several days, I’m eating Tylenol and Advil like candy, along with hugging a heating pad, along with taking a muscle relaxant at night. What a way to ring in my 10 year diagnosis, survival anniversary and 2020! I still want to do a BIG party for my 60th birthday and 10yr cancerversary… I’ll let you know when that can happen. Everyone will be invited!

And that’s not the entire ridiculous story of our life this month.
I’ll just highlight, as it’s too tedious to tell, and you’re probably tired of all my downer, negative stories.
Jim’s situation continues to be so challenging. The mood swings and physical challenges he goes thru everyday are just exhausting, painful and completely draining. Alzheimers and Dementia are just so awful.

I continue to be everything to everyone. Having to navigate all that is required to keep our lives and household afloat, all the while doing chemo and related side effects. Yes, I have lots of help, but it all still comes down to me having to micromanage everything. Just visualize all you do to make your life and household work… I’m in charge of it all, not by choice, just what it is. I lost my “do it all” guy.

Had to have a big part our roof repaired, redone due to rain leaks from last year.
Had electrical work done for faulty wiring… could have caused a fire in part of the house.
Jim has fallen several times this month, necessitating the need for others to come and assist.
Classic Alz mood swings are happening more often, you can read here for Alz details, just awful…
My vehicle battery died when I went to pick up a Wal Mart Grocery order one evening at the start of all this cold weather. Had to replace that.
Christmas Eve, after Jim’s falling incident, the carbon monoxide alarms began screeching at 1:00am
Due to the holiday, had to wait for hours and hours for the Gas Co tech to come.
Had to have all the Gas appliances off, till he arrived at 5am… after calling in around 1:30am…
Yes, up all that time, with windows opened, no heat in the house.
Gas Co tech discovered something crazy in our main house water heater. It was emitting “aldehyde”, a byproduct of natural gas not being vented, burned off properly.
As a result, no hot water for a few days, as this happened on Christmas Eve, Christmas Day.
Replaced 2 water heaters, as the other one was very old, and leaking.
The “aldehyde” created Soot in the pipes. So crazy. Have you heard of this? Ever experienced it?
Yes we could have “died” from the fumes emitted. Thankfully daughter Alissa was here to help, and encourage me to call the Gas Co. I just wanted to smash the alarm and ignore everything going on.
And more falls, more mood swings with Jim.

Then to top it all off, all my horrible tweeked muscles, nerves, bone pain from all my coughing reared it ugly self… The pain is just horrible and temporarily disabling, along with this mysterious non stop headache…

On top of everything else, and this may seem small to most, our horse hay was delivered was wrong. See as the horses get older, I transition from all Grass hay to part Alfalfa hay for the cold winter nights. I have the grass hay and alfalfa stacked in 2 separate rows. Well the delivery guy stacked the alfalfa in the back and grass in front, so we’re not able to access the alfalfa. Big deal you may think. Yes, just one more thing to deal with, with the possibility of medical issues with the horses.
Alfalfa hay is very rich, like us eating pasta, steak and cheesecake all the time. Horses have the chance of “Foundering” from it. Also known as Laminitis or “Cushing’s” disease. Our mini pony has this, and therefore must not have free access to Alfalfa hay. Anyway, the routine is messed up, and I’m too sick to deal with it, so let’s hope for the best, and our horses don’t get sick….

And on top of the top of all this… I received news my Myeloma numbers are climbing again. I only “cheated” on the Dex steroids 2 times, where I took 20mg vs the usual 40mg, and boom up go my numbers.
My IGA went up 200 points to 899, M Protein up to .81.
Normal for IGA is 70-400
Normal for M Protein is zero

And there’s so much more, so many more things that have happened, irritants, disappointments and minute by minute challenges. So many challenges, so much to think about, I’ve just let it go… I had a meltdown in the barn on Dex steroid crash day, the other day… I cry and laugh. Cry and laugh. Cry and laugh. Then get up and get going, and push it all away. Alissa happened to come out, and I felt bad her seeing me that way. I used to process everything psychologically, and encourage others to do the same. Now, I STUFF more stuff than I ever have my entire life…

Well, this post was going to be a 10 year recount of strength and resilience, celebrating my 10 year survival over Myeloma. But I’m just too beat up to pretend it’s all ok, and that I love life, and all is great and wonderful. That would be a lie and huge misrepresentation.

So cheers to surviving Myeloma for 10 years as of today! Yes, this time today, 10 years ago, I became a Cancer Patient. My previous posts recount my perspective over the years. Hopefully I’ll be full of hope and gratitude my first post of 2020!

Happy New Year to all, and I do sincerely hope you have wonderful holiday celebration with your loved ones, and cheers to health and happiness for all of us, right!

Here’s to 9 years of myeloma diagnosis posts:

2018
https://juliesmyelomamoments.blogspot.com/2018/12/9-years-ago-today-i-learned-myeloma.html


2017
https://juliesmyelomamoments.blogspot.com/2017/12/happy-new-year-you-have-myeloma.html


2016

https://juliesmyelomamoments.blogspot.com/2016/12/7-year-myeloma-diagnosis-anniversary.html 

2015
https://juliesmyelomamoments.blogspot.com/2015/12/6-years-ago-today-and-im-still-here-to.html

2014
https://juliesmyelomamoments.blogspot.com/2014/12/5-years-ago-today-boom-mm-forever.html

2013
https://juliesmyelomamoments.blogspot.com/2013/12/

2012
https://juliesmyelomamoments.blogspot.com/2012/12/

2011
https://juliesmyelomamoments.blogspot.com/2011/12/

2010
https://juliesmyelomamoments.blogspot.com/2010/12/

And onto 2020 with my posts on the 10s!

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Simple Sunday on Monday

The days of the week are a blur with Christmas last Wednesday and now NY on Wednesday this week. I am definitely off track.

Yesterday was a nice day though with going to the gym and then doing the LR zone. If you do Flylady there are 2 zones this week LR and then on Wednesday Entryway. That should add to all the confusion.

I made a broccoli cheddar soup for dinner last night and tweaked a Moosewood Cookbook recipe. I added some cream cheese to the soup as I didn’t have heavy cream. It came out really good although it was as thick as Panera’s it still had excellent flavor.

Today I’m going to brave driving down to Galleria area to Old Navy to pick up a partial order. I’m going to try their leggings and I also got two dressy blouses to wear on our dinner date in Chico. Well, I’m only going to wear one, of course. I had hit up Goodwill and Cancer thrift to find something and there just wasn’t a thing. Our Goodwill has gotten so bad. it’s mostly junk and things are picked over daily. I’m not sure what is happening in that store. There isn’t another Goodwill nearby so maybe that’s it. Plus our Salvation army store closed this year as well. I was actually trying to find something by JJill which is one of my favorite but no luck. I like Old Navy and the price, with sales, is pretty good. Anyway, I think I will try them on before I leave and if they don’t fit right I can return right then and there without a second trip.

Then that will be my big excursion. Tomorrow I am getting groceries for NYE ( we always do sub type sandwiches) and for the Chruscikis. They are Polish or Russian or basically European cookie that is a very rich dough that is fried.  They are not sweet but powdered sugar is sprinkled on top. My brother loves these and it’s one of the good memories he has of his childhood. So I’m the only one in our family who makes them.

I’m determined that we will do some traveling this year as we are both ( hopefully ) well enough. I’m going to plan our annual Santa Barbara trip that we missed last year. Of course this year B’s company won’t be paying the hotel for work. But that’s okay we will figure it out. Santa Barbara is about 7-8 hours drive but it’s doable. We have the things we like to do there and the beach trail is the best.

 

All tidied…

I took down the Christmas tree and B took it back out to the barn. Then I put everything I used as decorations in one bin along with leftover bags to be reused. Just one bin and I labeled it Christmas 2019, what I used.

It has been quite freeing to have Christmas be so minimal. It used to take me 2 days( of course, just pacing myself) to get everything put away right. This has been an eyeopener. I’m planning to go thru the 2 bins out in the barn sometime this summer( when it’s warm out there) and check if there was something else I would have liked to use. The rest, including all the Hallmark ornaments, will just get labeled for my kids whenever they have a place of their own. cdafb2f3-5d12-47d5-a1b9-0eb08ae93aa7.jpeg

The lights will be put in the tree bag so everything is together.

I need to have cleared off surfaces and very little on the table as it just feels like a fresh start. I’m thinking of getting a fresh new orchid though as I like that they last a really long time.

Our weather is quite cold, 30 degrees this morning but sunny. Tomorrow it’s supposed to rain.

Today I’m going to do a freezer inventory and see what needs to be used up and then plan some menus. I’m thinking of doing a No Spend January but I’ll think about some more. I have done these in the past and although I do get a lot out of it, I also seem to delay getting things that are needed and then it seems I spend money on them eventually. I think what I will do is do No Spend on anything extra like the other space heater we need. But things like household I will still buy( like dishwasher soap). Well, I’ll think about it till January 1st.

As 2019 comes to a close

It has been a year of highs and lows.

Lots of things were awful with B’s diagnosis and then being transfusion dependent. Lots of chemo visits weekly. But in spite of that, there have some great things. His brother was a 10/10 match for the BMT and that was amazing.

Being at UCD med center in the BMT unit for a month was hard, very hard, but it all went way better than expected. Staying at the Kiwanis in our friends RV was also great and made the whole experience of having to be there almost 3 weeks delightful. Being able to be just minutes from the clinic made it all worth it.

Recovery and gaining strength and energy back has been slow but sure. B is doing amazing and he is almost 7 months post-transplant.

There has been no major graft vs host although he must remain vigilant as that can happen even down the road.  Now he is tapering off immunosuppressants and that means less prescriptions. He will still need his vaccinations sometime next year.

So the year really was a mixed bag of emotions but overall I feel very positive about it. We did fine financially with the extra GoFund Me and the SDI. This week will be his last SDI and I am totally grateful to have had NOT to worry about money. After my transplant in 2006 and that following year, we were in serious,serious debt and it was awful. There were no GoFundME things or networks to receive financial help. I did have 2 friends that were very generous and that was a blessing.

At the end of this year, I feel grateful for my health and my children’s health. Both of my children have excellent jobs that they earned this year.

B will also officially retire as going back to full time just isn’t going to work for him. I will miss the paychecks and being able to travel with him, but honestly, he is 69 and with everything that has happened, life is just too short to go back to a job even if it’s only for another year. Who knows what will happen and he has this chance to retire. Social Security will be tough but hey, so what! We have struggled before and made it and if we can only do so much then so be it. Actually, I’m just grateful we have the little we will have coming in as it will cover our basics.

WE didn’t do any traveling and that was okay. We are planning something once a month for  2020. Next month we are planning an overnight to Chico where B has a free room at one of the nicer hotels downtown. We are planning to have dinner at a place I’ve wanted to go forever called the Red Tavern. I can’t remember where I read about it over 5 years ago, but it’s supposed to one of the best restaurants around.

House wise, we didn’t do anything major except outside and tree removal.  We did replace two windows and they look great. Next year we will replace a few more windows in the bathroom and kitchen and my daughter’s room as well. Next year, we hope to work on the kitchen and do a minor remodel( mostly the sink and counter as it is 25 years old this summer and the sink connections are pretty rusty.

So life keeps on keeping on and it really is a wonderful life.

Buone Feste! Happy Holidays!

Well, this year I have to admit that I don’t have much in the way of a festive spirit, which is very unusual for me. I have always loved the Xmas holidays, decorating the house, making cookies, etc.

Not this year.

There are several reasons why I’ve been down and out about the holidays. One is that Stefano and I were supposed to be in Prague right now, lovely Prague with its glittering streets and Xmas markets…but instead we’re still here, in Florence. We had to cancel our trip to Prague because I came down with a rather nasty case of the flu (high fever, etc.) on the eve of our departure.

Of course, now I’m fine… 😉

Typical.

That’s not the main reason I’m all down and out, just one of the many. But I can’t talk here about the other ones (which have nothing to do with me or my health, or with Stefano, mind you!). Suffice it to say that this hasn’t been a brilliant period…not at all. I keep getting bad news about people who are close to me…And I’m sure all that accumulated stress contributed to my finally giving in to a stupid case of the flu. Ahhhh, stress…How sneaky it can be…

Anyway, we’re trying our best to put together a nice little Xmas just for the two of us. Stefano is in the kitchen right now, cooking up a storm. Yesterday he made a huge pot of broth (his broth is legendary…) and other yummies. Today he’s making a huge meat sauce. I made a fantastic cake. So one thing is for sure: we won’t die of hunger! 😉

The day after Xmas we may drive to northern Italy. Or we’ll stay here at home, watch Xmas movies and get some rest. We’ll see what we feel like doing. The important thing is to be together…

Anyway, sorry for not being my usual optimistic cheery self, but I’ll get over it. 2020 is around the corner, and this dastardly period of bad (and very bad) news just has to end. Enough is enough!

So, with that in mind, I hope you are all having a wonderful restful and fun holiday period…

HAPPY HOLIDAYS, everyone! 🙂

A FEW HOURS LATER: Okay, okay, OKAY! I am MUCH more in the holiday spirit now. We decided to go on a short trip with my brother-in-law and his family day after tomorrow. Yes, some fun is back in the holidays again. I’m almost back to my old festive self now, hehe.

Love and happiness to everyone! 😎

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Worcester Rd – the new pharmacy!

As I started this blog this morning I was taking a wide variety of drugs and cocktails!

  1. Daratumamab – immunotherapy drug
  2. Velcade – chemo drug
  3. Dexamethasone – evil drug – should not be allowed past go. Ruins relationship, friendships and more!
  4. Lanziprazole – protects stomach…I think
  5. Co-trimoxazole – godminly knows, I just take them and hope!
  6. Pregablin – reduces impact of neuropathy in feet, calves and hopefully is reducing pain in back.
  7. Colosevelam – deals with mile-bilemalabsortion – don’t look that condition up if you’re eating!
  8. conjugated oestrogen – for early menopause that kicked in at 35
  9. Sertraline – for the depression that can’t help but find a homely place in our house with everything else that is going on! My saviour

But today I’ve been joined to another regime. And today……drum roll……-another one is joining the ranks in the form of ZOPICLONE – a sleeping tablet. And it’s already made me spaced out and unable to hold a straight line! Hoping I’ll be ok for tomorrow as driving to oxford to visit my dad!!

I’ve also been given next week off velcade and Dex so we can have some time where I’m fit enough to do some things. Hurrah! Bloody fantastic! Might even have a little topple for new year!

But it made sense to try as I’ve only been getting between 1and 4 hours on a Monday with Tuesday slightly better at around 6-8 hours. But I feel awful between Tuesday eve and Friday eve and it’s miserable. If sleep is anything to do with it, I’d like to vaguely enjoy Christmas Day! We’re cooking for 6 but hopefully will be organised enough we can look to the guests to help nick to wash and clear!

  • Remember
  • Don’t overdo it – it’s only one day
  • If you burn anything hide it and pretend you never had it on the menu
  • If you burn anything remember you’ll be eating twice your body weight for 6 hours solid so will be totally grateful it was one less thing to eat
  • When you look at yourself the next day and wonder why you ate everything you knew will make you fat, and a month to get off the hips, please don’t bore us all with your plans for the gym!!
  • When you say ‘I shouldn’t’ when offered that extra drink….don’t if you really don’t want to …. but if you do….bloody do it!
  • Right I’m jibbering rubs is hand want these tablets to send me into a deep sleep! Wish Me luck

Anyway, can’t see me writing again for a few days so wishing all my friends, family and general subscribes a 🎄VERY HAPPY CHRISTMAS🎄

Happy Hanukkah

We had a nice dinner of latkes, roast chicken, nut loaf( from thanksgiving) with sour cream and the last jar of my homemade applesauce from last fall.

We lit the candle ( one, for the first night). Then we each had a little gift of cash, and B got us 1 lottery ticket. I never win anything so… but he actually recouped $6.00. Still, it was fun to chat and share this time with Sachi and Zephyr and Barclay. My family.

Today I’m doing the Flylady bedroom zone. It’s pretty much done as I change the sheets on Sundays. But I will dust and tidy.

Other than that, just a nice quiet day home.

Yesterday I did make another batch of homemade peanut brittle. I had bought a candy thermometer and it was a great $10 buy as right on it is the temperatures for hard brittle etc. Well worth it to have.

I might make a soup tonight or just something light. Latkes are fried and although not really heavy still fried!! So I have a butternut squash from our garden to use so I think that’s what I’ll make. I found a recipe that was butternut squash and red lentil soup. It’s kinda a curry so I might do that.

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Almost ready!!!

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The mix that was done in the food processor. And of course, the wine glass!!

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Frying up the Latkes

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This is my red fiesta ware that I use at Christmas. Oh, in the background you can see the peanut brittle.

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This was our Solstice fire.

 

Shouldn’t We Be Improving AFFORDABLE Access To Life Saving Drugs!  Most Else Is Just BS ( Bogus Spin)

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The major components of the new drug plans in the House focuses on Drug Pricing, and the Senate’s bill on pricing really does not even confront the Elephant in the room, which is the lack of negotiation of Medicare Drug Prices.  However, both bills have one thing which will improve ACCESS, which is the cap on out of pocket costs, the House at $2000 and the Senate at $3100.   So what is the Bogus Spin?  There are 3 major categories of BS (Bogus Spin)

– Reducing Negotiated Drug Prices will improve  AFFORDABLE ACCESS to life saving drugs.
– New Drug innovation will be stifled if Medicare negotiates price.
– We have the BEST health care system MONEY CAN BUY.

I had planned to do a three part YouTube broadcast on these three elements, but everyone was focused on other government business(impeachment).  I think it is only logical to start this series after the holidays.  However, I believe I can outline some of the logic beforehand.

Reducing Negotiated Drug Prices will improve AFFORDABLE ACCESS to life saving drugs.

Most private and government insurance (eg. Medicare, Medicaid) base the copay at a percentage of the List Price, not the Negotiated Price.  If the negotiated price goes down by 50% the list remains the same so the copay does not change one bit!  Copay must be changed to a percent of  net  pricing. 

The Insurance companies increase the copay % as the price of the drug goes up.  They call it Tiers, and I think they need to change the spelling to TEARS.  Tier 1 (preferred generic drugs)has a very reasonable copay of $5 to $15 per prescription, but in higher cost drugs in Tier 4 and the Specialty Drug Tier it is 25 to 33%  For cancer drugs this can represent $3000 to $5000 per month. I have myeloma and the one drug which is used in most all treatment regimens is Revlimid, at an out of pocket cost of $14,000 per year.  See the graph below.


 TAffordable is a major key to this entire argument.  Is it affordable to all Americans?  I say that is so much BS(Bogus Spin).  It is not affordable to most seniors, nor the middle class, the needy, and minorities.  Let me just talk for a minute about very sick seniors!  The ones with heart disease or cancer.  The number 1 and 2 killer of Americans.  According to the Kaiser Family Foundation the average income of a Medicare Beneficiary was $26,200 in 2016.  To be covered for the 20% copay of Part A & B, they would need to have Part G or F as well, and include Part D for drugs.  Cost for these insurance premiums is $5000 each year and with one drug like Revlimid at a copay of $14000, it comes to a total of $19000.  This is the equivalent to Senior Genocide, but with all cancers a slow agonizing death. Over 600,000 Americans die of Cancer each year!  Just for comparative purposes this contrasts to the costliest war in US history, the Civil War, where 620,000 soldiers died over a period of 4 years. 

New Drug innovation will be stifled if Medicare negotiates price.

If you were provided a free lunch everyday and it was excellent food, why on earth would you pay for your own?   Not having to negotiate price is the “ART OF THE NO DEAL”.   Drug companies must negotiate prices with all major industrialized nations, and private insurance companies and PBM’s(Pharmacy Benefit Managers), but for everything they lose in these negotiations can be made up by just raising list prices which Medicare will pay by law!

The NHS provides billions of dollar to fund the development of new drugs, and academic institutions provide basic research for drug development.  Frequently, this work is then developed by very small companies which do not have the capital to spend the billions to get FDA approval.  If they have a great idea, they usually are purchased or license  the drug to a large drug company, which has the funding to bring it to market.  The two blockbuster myeloma drugs, Thalidomide/Revlimid(Celgene)and  Velcade(Takeda) were developed by very small companies. Celgene was very small when it licensed the use of Thalidomide from Rockefeller University, and Velcade was first developed by a small biotech ProScript to treat muscle weakness and muscle loss associated with AIDS and muscular dystrophy and ultimately was purchased by Takeda.

To me the biggest barrier to new drug development is the lack of protections for small bio tech firms which have become the target of Illegal and criminal stock market manipulation.  Small companies can easily be forced into bankruptcy by Capital Vultures who have found easy prey in small and vulnerable biotech firms.  Many companies have been devalued by as much as 99% in just 5 years.  How many life saving drugs have not made it to market because of these heartless and morally bankrupt animals who feed off the dead and dying?  I explain this in a 3 part series and you can read it if you CLICK HERE.  Two prior blog posts on this major problem are as below, just click on either of the following story headings.

What If The New Cancer Drug Pipeline Runs Dry? No New Cancer Drugs! Patients DIE!
The Proof Capital Vultures Are Destroying Baby Bio Tech Companies Before They Have Time To Create New Drugs!

The USA has the BEST health care system MONEY CAN BUY.

This one is very hard to argue with unless we look at the definition of the word BEST.    If best is the one where you can get the best care in the world only IF you have all the money in the world, then it is hard to argue against this statement.  If best is defined by any other measure, best life expectancy, care for all citizens, care for the elderly and needy, most cost effective per citizen, non discriminatory, lowest infant mortality, ad infinitum, then we have a very long way to go. 

Each of these points will be discussed in my 3 part YouTube webcast titled “The Bogus Spin Report” or in short “The BS Report”. Good luck and God Bless your Cancer Journey/ editor@myelomasurvival.com

For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1

Winter Solstice

Finally, the darkest day of the year!

Now it will slowly turn around and the days will get lighter. I’ve actually looked at this over the years and the sunrises and sunsets don’t change a whole lot till around January.

So today we will walk. We’ve been going out around 6:30 am and it’s still darkish and then by round 2, the light is showing.

Yesterday, my daughter and I drove up to Truckee to the library as she had a bag of goodies for her ex- co-workers. I loaded up on cookbooks and I even found on the FOL shelf Comey’s book from last year. the summit had snow at 7300 elevation but around Truckee, there wasn’t that much snow. another storm is headed in this weekend. We had a lovely lunch at Wild Cherries and headed back home.  I’m so glad she is not driving that daily and driving to Sierra College is like 22 minutes and no snow. So she just needs a few more hours to be able to buy into their insurance. I think she said at 22 hours. So one more shift.

I also had an appt to meet my new PCP with Sutter. He seems nice enough. I’m planning on the colonoscopy for the end of January or beginning of February sometime. Oh well, I guess I can suffer thru.

Hanukkah begins tomorrow night and I have the Menorah ready. Although we are not Jewish, but Atheists, I still like the idea of Festival of lights and candles and little presents.

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a lovely new platter( stoneware ) and our very own lemons from the greenhouse!