Stanyan Street

The Oakland Gang: niece Tillie, me, Nephew Joey, my wife Marilyn, and Noah our oldest son.

Due to my cancer, multiple myeloma, the physical adventure of traveling challenges my attitude. I dislike flying: the herding, the depressing bag of pretzels, and the cabin’s claustrophobic fit. Yet, once again, my wife and I chose to spend the holidays in San Francisco’s Bay Area.

We stayed in Oakland at a hotel on Broadway, close to where our oldest son lives. We were joined by a niece, who lives and works in a town nearby and her brother, our nephew, who was visiting following the completion of his degree at Tufts University in Boston.

Lake Chalet

I’d arranged to re-schedule my twice monthly infusions so as to not interfere with our activities. My treatment also includes oral drugs, which can continue when I’m on the road. I take a chemo type pill once a day and a steroid once a week. I’ve become inured to the daily pill. Its side effects blend into the general fatigue syndrome that characterizes my blood cancer. The steroid, though, radically alters my mood, my energy, and, perhaps, my personality.

IMM

We dined at a number of excellent restaurants: Itani, brunch at Lake Chalet, The Berkeley Social Club,  a morning snack at The Rotunda on the first morning, the hotel’s restaurant for breakfast Christmas day, then Farley’s East on the penultimate morning. Prior to seeing the movie, Little Women, we ate Thai street food at IMM and finally a goodbye meal at Tay Ho, a French/Vietnamese restaurant.

The highlight, however, was Christmas dinner at my brother and sister-in-law’s house in San Francisco. The Oakland gang merged with the San Francisco gang. 

Brother and Sister-in-Law’s house on Stanyan Street

The house sits near the top of Stanyan Street above Golden Gate Park. It is of Victorian vintage, built early in the twentieth century. (1904)

There are three levels situated on a steep slope adjacent to Sutro Forest. My brother and his wife live on the top floor. Their daughter and son-in-law and 12 year old grandson occupy the main floor. A laundry and storage, as well as a small studio apartment finish out the dwelling. There is also a two car garage, quite a luxury in parking starved San Francisco. They bought the house for $100,000 in 1973.

Oakland street art.

They admit to initially being anxious about the mortgage. At the time, my brother was a San Francisco fireman. His wife worked in medical research. She then chose to get a law degree and eventually became a patent attorney. Along the way, she also bore a child. By investing in their ingenuity, they were able to persevere through those early busy years. The house is now worth much, much more than the purchase price.

Stanyan Street

Main floor of the Rotunda in Oakland, CA

Christmas day was my steroid day. Under the influence of the drug, I sometimes jabber too much. I have also been known to say the wrong thing at the wrong time. Such are the perils of the steroid high. My faux pas filter, however, managed to keep me out of trouble. The convivial conversation even  prompted me to toast the three family lines in attendance. 

But, the enduring star was the house itself. Nurtured by my brother and his wife through the years, it has hosted numerous events commemorating family passages. There was a going away party for my wife and I decades ago when we immigrated to New Zealand. Then, in the not too distant past, a support reunion party for me prior to my stem cell transplant.

Tay Ho

Furthermore, two of their granddaughters lived there while launching into adulthood. And, my SIL’s mother spent her final days in one of the downstairs apartments. Birth, death, and all the transitions in between: such is the legacy of the Stanyan Street house.

When the evening ended, my wife and I returned to Oakland with our son. The lights of the Bay Bridge glittered with holiday flair. My slumpiness from the myeloma had vanished temporarily, along with other aches and pains of disease and aging. The day’s activities had drained the jolt of energy caused by the drug. Yet, I still floated in the steroid’s groove and mused, without judgment, as to how my body is no longer entirely my own. It is managed, to a degree, by pharmaceuticals. That’s ok. I would not be alive without them. 

Travel plans

Now that Christmas and NY are over, it’s back to my regular things.

I’m already planning some trips for us and what I’ve lined up so far is

  • Chico to stay at the Diamond Hotel( a restored old hotel) and dinner at the Red Tavern which is kinda fancy.
  • Yosemite and a stay at the Ahwahnee which is on my bucket list. Plus I’d never go to Yosemite during the tourist season. We did that camping when our kids were young and it was busy but not insanely so as it is now. We’re staying only one night due to the cost factor. It should be about a 3 1/2 hour drive so quite doable.
  • I still need to book the dates for Santa Barbara. I’m thinking early March which should be lovely down there. This will be 3 nights as it is too far just for 2 nights. Although we might just stay 2 nights and then the other night in Monterey as that’s about the half waypoint. ( it is a long drive)
  • April, I’m hoping we can get into New Brighton Stat beach and will look at that this weekend actually. It always books out that time of year so I don’t know yet.
  • Update on New Brighton. Just made a reservation for April so we’re set there. It’s after Easter and there were only a few spots with 3 nights. So I took one.
  • May has nothing, maybe camping?
  • June -nothing yet. Everything at nevada beach is booked:(
  • July we usually stay home
  • August nothing yet

The rest is open and I’ll see where we are.

 

Simple Sunday

It’s been a nice week although weird again with the holiday in the middle of the week. I kept thinking Thursday was Monday. Oh well, it seems that we’re back on course and today is Sunday.

We did a shop a Costco on Friday and didn’t overdo it. I bought extra coffee and TP so we won’t need to ‘run’ down there for those things. We are eyeing a new TV though. Ours is about 8 years old and still works but the sound quality isn’t the best. There are some sales for the super bowl so if I think we can swing it, I will.

B’s last SDI was this last week too. He did get a notice to have his doctor fill out a form about not returning to work, so I’m not sure if they would extend his benefits to use up the little he has left or if it’s just paperwork. What I read is the maximum award is 12months, so we’ll see. We’ll try and do that next week although he sees his doctor on Tuesday and I’m sure it won’t be in the mail by then.

This month will be the big test of how we do without the SDI. I know it’s going to be an adjustment. But at least we have no big bills in January just the car tags for the old van. Still, that’s $150. I have been saving quite a bit of the SDI so that I know I won’t be adding to the savings.

Also, we had to call on his Cobra as, just as expected, the Noxafil prescription came in at$1200.  This amount was the Medicare Part D prescrpiton plan that I’m not planning on using that’s why we’re paying the Cobra amount. I am not paying that much money when last month it was 0.00 co-pay.  So he called and the Cobra payment letter was just going out. So we did it online and then now we have to wait for it to get activated by the prescription plan. After that, we still don’t know what the co-pay will be since we haven’t reached any yearly deductible.  It’s all unsettled right now but next week we should know and hopefully, it’ll be resolved.

Plus we know that within a few months Noxafil will be reduced or eliminated so then we will cancel the Cobra and just use the Medicare Part D as all his other drugs are Tier 2. I think it’s only Noxafil that is Tier 5. What a Fucking scam is all I have to say.

Today is a gym day and we will go for our walk shortly.

Flylady zone is the kitchen and I’ll start that today but finish tomorrow.

I made a new recipe last night from another blogger( Teresa Kasner)

She lives along the Columbia River in an old beautiful farmhouse. Her pictures are outstanding. So the recipe was for Chicken with potatoes and spinach in a creamy parmesan sauce. It was good.

This week is Clinic for Barclay and our overnight trip. Plus whatever stress with the prescription stuff comes up.:(

I started a list of projects for the year and we’ll see how far we get.

  1. to drop the wood stove to floor level so that the footprint is lower and less of an eyesore. We built the platform specifically so we wouldn’t be bending to put wood in but it does take up a lot of floor space. This won’t cost a lot except added stove pipe( which is pricey) but we won’t need a lot. And some stone for the floor. Our woodstove is quite efficient and we will keep it for a few more years. Eventually, we will put in a gas/propane stove. But that’s maybe 5 years out still.
  2. We will be replacing windows in my daughter’s room. This will be maybe @ $1000 as it will be 2 windows replacing one large one. The Anderson windows we bought last summer are great and very energy efficient. So that ended up @ $800( I think).
  3. I’d like to also replace the bathroom window. Same size but just more energy efficient. All the windows in the house we’re replaced when we remodeled but they are now 25 years old so an upgrade will be nice.
  4. I don’t think we will get to any bathroom remodel this year.
  5. I think we are going to try and redo some of the kitchen. The biggest thing is the counters and sink( pipes underneath) really need to be redone. Getting a new pantry system from Ikea will be first on the list as that will be freestanding.

There’s always garden work and yard work. That’s kinda ongoing.

Barclay’s official retirement date is January 30. That’s 25 years. It’s hard to let go of, I think, because of the way it all happened with him getting sick. But how incredibly lucky we are for modern science that has given him a new chance without cancer. Even I can’t say that, although I have been extraordinarily lucky that my Myeloma has responded to treatment. Well, it is what it is.

AE52C58B-6FCA-47BF-BA64-620BDBE3330C.jpeg

61FBB322-7A10-4DAC-98FD-9E0EC2D84FEF.jpeg

8B49F1D0-3CCA-4332-BD04-A78B50242DC9

This was our dinner the other night. A small piece of filet mignon and a Beyond Meat sausage( which are delicious BTW).

 

 

Hello, 2020

Hello, 2020!!

Time marches on which is a lesson for all of us. It really can be a good day, a lousy year, a wonderful moment but it still keeps moving forward as we should do as well.

I look forward to whatever 2020 holds in store for me. I suppose chemo won’t be a fun thing to do weekly but you get used to things. I have the dreaded colonoscopy scheduled( it will be my first and last). Who knows what that might reveal. Doesn’t really matter, it’ll be whatever the hell it is. It’s really just a question of dealing with it and moving on.

I’m looking forward to some camping trips and some other getaways.

Here’s to new adventures whatever they may be.

hello2020.jpg

 

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.

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.

C0AD4DDF-AFC4-4B3B-AEB5-9D00AEBF1245.jpeg

Almost ready!!!

AB515167-81E9-4105-9C42-650F8B00ADED.jpeg

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

CA7157C1-F111-4EE0-8579-21079293917E.jpeg

Frying up the Latkes

C03F128A-7029-473B-8E34-8EC1665956CD.jpeg

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

69E967AE-667E-48F2-894E-FEF287C55248.jpeg

This was our Solstice fire.

 

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

Picture

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