First Post on the 10s for My 10th Year of Myeloma Survival

1.10.2020

Happy New Year!
Happy 10th year of Survival to me :))
Hello to 2020 and Blog Posts on the 10’s!

Of course I had so many ideas for what I wanted to write this first post of 2020, the first post on the 10s, of my 10th year of Myeloma survival…

But
But
But

All those ideas are still simmering, and stewing and brewing…
Just don’t want to start off 2020 with Negativity, Sadness, Frustration, Disappointments, and being Melancholy… So this post will be all about many the things I am Grateful for, within all the overwhelming unexpected life changes I have had to confront, accept and adjust to…

Yes, I have so much to be Grateful for!
Where do I begin…

I’m grateful for modern bathrooms, specifically MY bathroom
I’m grateful for toilet paper and wipes
I’m grateful my body can process in, and out, all the complex, chemical treatments I currently endure and have endured for over 10 years to survive the 10 years I have! …

And with that… I’ll be back! Because you know why…

====================

Things I Am Grateful for this new 2020 year:
Surviving Myeloma for 10+ years with the type of life I
still have
So grateful for-
Medical Science Research creating all the chemo chemicals
saving my life
Scientists, Doctors, Nurses, Pharmacists, Pharma staff,
All Medical Staff
My incredible Insurance that pays for all my treatments
The convenience of Kaiser treatment centers so close to
me
The friendliness of most all of the staff members I
encounter in person and on the phone
Goes without saying…
I am beyond beyond beyond grateful for all the Loving, Caring, Supportive, giving, helpful, helping people in my life!

Beyond grateful for my loving Family, amazing Caregivers, sweet Friends, Supporters, You, people that
work for us, help us, and those that understand and empathize with our medical disaster

So grateful for all the people that create, make, process, sell, deliver all the products
and services we need to stay alive and maintain the life we have

I am so grateful to be living in a country that can
provide the all the Health Care available to me and others suffering with
health issues
I am grateful for all the modern conveniences that make
my life easier to navigate
I am grateful I have a car to get me to treatments
I am grateful for all the mechanics, technicians that
make my vehicles safe and for the Auto Club that rescues me when my battery
dies
I am so grateful for electricity, water, heat, and all
the appliances in my home
I am grateful for all the Veterinarians that take care of
my critters
I am grateful for all the people that grow hay for my
horses, and for Fox Feed that delivers to my barn
I am grateful for all the companies that make and create
products for all the animals we have that we rescued

I’m grateful for all our animals that give us so much love and laughs
I’m grateful I am able to still care for all of them
I am grateful for my old horses getting older with me
I am grateful for all the lives we’ve saved

I am grateful for all the food producers, farms,
companies, businesses that create the unbelievable food choices that Americans
have
I am so grateful for technology, connecting all of us
together, and connecting everything together, and making my life so much easier
as an incurable, immune compromised, never ending cancer patient

I am grateful for TV, as I never watched so much TV in all my life, since being a sickie
I am grateful for books, magazines, and anything I can read, and the authors that write as they do

I am so grateful I am able to grateful
I am so grateful I am able to write about what I am
grateful for
I am grateful for all the years Jim and worked and worked
and worked, so we are able to stay in our home, despite the complete
devastation from both our awful, terrible, incurable illnesses
I am so grateful for the 35 amazing years I had as a college counselor 
I am grateful I still have a functioning brain
I am grateful I still have a functioning body, no matter
how awful my daily, weekly side effects are
I am grateful for all my senses. Every single one of them
are so vital to quality of life.
I am so very grateful for the beauty of nature, this
earth, the sun, the sky, the moon, the stars, the animals, the trees, the flowers, the grass, every single part of nature I am so grateful for
I am grateful for all that keeps this life going that I
know nothing of
I am grateful for the power of the Universe that I don’t
understand, but hope to one day…
I am grateful I am still independent, and can basically
do whatever I want, whenever I want, however I want, … although I really can’t do much of
anything because of daily, weekly side effects, but I am so grateful for the
option that I can, if I could
I AM SO VERY GRATEFUL FOR MY LIFE AND FOR STILL BEING ALIVE!

Later today I have CT scan on my Head, as I’ve had non stop headaches for about a month now. Started with the lousy head cold I had mid December 2019, then continued and continued and continued. So I finally went to Urgent Care last Friday, and the Dr ordered the CT head scan. I know I have pre existing lesions, holes and a “hard” external tumor-lump on my head, so it will be interesting to see what the scan shows… more on that next post on the 10’s!

Thank you for reading and caring as you do! Hope all is well with your 2020!

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If USA Healthcare Was Affordably Accessible, The Very Sick Would Love Drug Companies, Insurance Companies, Government, And Medicare

Picture

As a myeloma patient I feel blessed to have had great insurance through my wife who had great union benefits as a teachers aide.  I  had kidney failure so I could get Medicare coverage as a secondary insurance.  In addition this coverage allowed me to be treated at Mayo and UAMS, two of the world’s best Myeloma Centers.  So personally I loved my doctors, hospitals, and drug companies because I had AFFORDABLE ACCESS to excellent health care.  I, plus perhaps 50% of Americans, are equally blessed.  This leaves the remaining 50% without affordable access to our system, and this makes all the sense in the world why the following statements are true, and all else is bogus spin.

We spend twice as much as the highest per capita spending of any other nation in the world.  Over twice as much as the average of all other developed countries.  We should have a healthier population than the rest of the world, but over and over on any measure life expectancy, child death rate, etc. we are seldom even in the top 10.  We do not get what we PAY FOR !

Drug Prices are 2 to 10 times more  expensive than in most other counties.  All other nations and commercial insurance negotiates for lower prices, but Medicare does not.  It is like everyone gets to buy a car at half price except the US which must pay list!  Whatever drug companies give up to other great negotiators is made up by increasing list on Medicare!

Insurance companies, PBM’s and Medicare base copays as a percent of List price, and not of negotiated price.  If the insurer get a 50% discount you still pay the SAME % of List.  Also as the price of drugs increase the copay cost goes up.,  The copay for generic drugs is low $5 to $10 per prescription, but Tier 4 and specialty drugs(like cancer drugs) far greater and can be as much as 30 to 35% of the list price or as much as $5000 per per prescription.  The copays must be limited to $100 to $200 per prescription. 

Medicare Part B has no out of pocket maximum, so 20% or $500,000 for a stem cell transplant is HUGE!  A Medigap plan would be required at an additional $3000 to pick up this extra 20%. 

The new laws in the House and Senate do not address the issue of affordability, but could with some key modifications.  The following discusses most of the above and more.



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

Janus *

Look at my hopes, look at my dreams
Rent – Pet Shop Boys

The rest of my 100 days passed uneventfully. More focus on family and the kids than on me, which is progress in itself. And we had a happy Christmas and a peaceful new year (as, I hope, did you.)

Here endeth the good news.

Sadly my light chain levels are not what anyone might have hoped. They were 200 in November, 250 in December, only a little lower than before the transplant. It’s certainly not remission. My consultant calls it “stable”, but she is just being polite. It is not stable. It’s no better than where we were a year ago. This news triggers a number of quite intense feelings, with which I’ve grappled over the festive period. Disappointment. Trepidation. Frustration.
(1) All that, for this? The shitting and puking seemed more worthwhile when I imagined we were achieving something.
(2) I don’t relish the next line of treatment. I’ve been promised my next regime will be not dissimilar to the one that caused me platelet problems last year (pomalidomide instead of lenalidomide, plus cyclo and dex). And I can take it continuously until it stops working. So that’s something to look forward to.
But most of all, (3) is the endless perpetual unknowing. Remission would have at least promised a measurable, meaningful period of time when I could be confident I’d be treatment free. Now I don’t know if I’ll need to restart next year, or next month. I’m in the same interminable situation I have been in for ages. The transplant really hasn’t achieved anything.
All of that has been tough to face up to.

I had another BoMB, as inconclusive as ever. Not least because it was obvious that it wasn’t the first time they’d dug a hole in that location. Pepper pot pelvis, the consultant calls it, cheerily, and suggests they try the other side next time. I don’t anticipate it will be any more productive, as I’m just as battle scarred the other side too. I’m not brave enough to tell them I refuse to have any more biopsies – the doctors want, and deserve, all the information they can get. But the outcome is always unreliable, so it’s pain for no gain. How many more times is it worth bothering? (I once read that if it’s not possible to biopsy the sacrum, sometimes people have biopsies in their sternum instead… I’m trying to forget I read it. I really really don’t want to go there, but I won’t be surprised if I have to.)

I’m booked in for another whole body MRI to see if there’s been more bone damage in the last 6 months. If there is any sign at all, I think I’ll be straight back on the chemo. If not, we’ll wait a bit, though it is slightly like Russian roulette, in that by waiting we merely increase the likelihood that more bone damage will happen. My consultant says we should be “on the front foot”, given that (irreversible) bone damage is my main symptom – i.e. treat sooner, rather than later to try to minimise the incremental deterioration. She also says that, given recent experience, we should be looking for “a new approach”, as evidence suggests traditional regimes (imids / proteasome inhibitors / auto-sct) only work, at best, briefly. I’m not sure what all the possible new approaches are, though CAR-T is clearly the front-runner.

In the mean time, I have taken possession of my new spinal brace. It certainly helps in specific situations – when I need to stand around for any length of time, or when I need to sit in crappy chairs (of which the world is surprisingly full, let me tell you). It doesn’t make any problems go away, but it makes them more bearable. It’s a bit like wearing a corset. Though for the sake of my manliness I’m referring to it, instead, as my stab-vest.

I’ve had lots of people tell me, lately, how well I look. Which is nice. Really. Thank you. I feel a bit of a shit not responding very enthusiastically. But it’s complicated. And I know what I’m dealing with. Looks can be deceiving. I know everyone wants a happy ending. But it’s not that kind of story.

We’re a long way through the looking glass by now. Front line treatment, all those years ago, was about recovering and reclaiming normality. And for a while, I did. 2 years ago the hope was that we could repeat the trick. But it hasn’t worked out like that. The consultant describes my situation as “a concern”. I can see by the looks on the medics’ faces that I’m in a different position; different prognosis, frankly. I’m not saying my time is up – we’ll probably get on to the long discussed CAR-T therapy at some point, and any outcome is possible (including, potentially, cure). But I’m no longer imagining a return to the years of worry-free(ish) remission. Future years are likely, at best, to be a mix of what I’ve gone through in the last 3: a good one, a bad one, a mixed one…

A form arrives from the DWP, to assess my fitness to work. As I give it to the doctor, the residual voice in my head that still tells me I’m exaggerating my predicament makes me attempt to justify myself:
“I would work if I could, but I never know what’s coming”.
Sometimes, one can understand more by people‘s expressions than by what they actually say. The look on her face tells me I was deluded to even be worrying about work. She says something about quality of life. The subtext is about quantity though, as much as quality. She signs me off as unable to work, and unlikely to be able to work in the future.

This week, with Marisa back at work and the kids at school, the house is very empty. I know in my head that I need to be creating a schedule that works for this me. It’s easy enough, in principle, to draft:

Mondays – community centre trustee stuff
Tuesdays – go swimming
Wednesdays – write my book
Thursdays – a.n.other local charity project tbc
Fridays – go to an exhibition

It doesn’t sound too bad, does it? Except it is a schedule based on keeping myself occupied, rather than being productive. And all around me everyone I know is doing what people in their 40s do: knuckling down to pay the mortgage and feed the kids. How often, in the past, I might have dreamt of escaping from the grind. Now, faced with it through no choice of my own, I’m really struggling with motivation. Arguably the greatest challenge I face, right now, is to answer another of the voices in my head, the one that asks me:
“Why bother?”

I’d pep this all up a bit for you. Sweeten the pill. Soften the blow. Make it a little more fun to read. Except, however ugly and unwelcome, it’s the truth.

* Janus: the Roman god of…
     beginnings;
     gates;
     transitions;
     time;
     duality;
     doorways;
     passages; and
     endings.
I’m not sure where I am, but I think Janus covers all the possibilities.

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2020 – A (Belated) New Year!

I started writing this post a couple of weeks ago at my last consultant appointment and forgot to post it so here it is with a postscript at the end!

Although my last post was written on Christmas Eve, looking back on it I must have been Hugh as a kite!! I hadn’t realised quite how bad it was until Nick told me on Christmas Day – by the end it didn’t make any sense at all! But the good news is that the sleeping tablets got me asleep and I had a much better Christmas because of it!

In fact we had a lovely Christmas and New Year. It was massively busy with guests but a great time of catching up with people and making the most of my health as it is at the moment.

And now we’re on the countdown. Or at least I am. Unless anything changes, I have 10 weeks left on treatment, before I have a 2 month break and then my second Stem Cell Transplant. I really do think myself lucky to have had 9 years inbetween my transplants but it doesn’t stop the interpretation that I’m feeling about going through it all again. We’ve got a date now for February to discuss the procedure (and how it might have changed from my first time) so that will be interesting … it has definitely made it feel more real!

But as for the here and now, things plod along really. As I said, I’m back on the velcade and it has hit me hard this week. It always seems to when I have a break! I slept for 3 hours last night (while the kids made their own dinner and sorted themselves out), and then got up this morning, pottered for half an hour and then was back in bed until it was time to leave for hospital at lunchtime! And I’m still exhausted and feeling. Very bizarre.

None of it is made easier by the fact I’ve now also been diagnosed with Meibomian Gland Dysfunction (MGD). It basically means that the glands in my eyelids are blocked and so can’t secrete tears properly. So I either have really dry, itchy eyes, or I have tears rolling down my eyes! Normally the latter! It makes you just feel even more tired and blurry eyed than normal which I can’t imagine helps my overall feeling of wellbeing.

Haha. Also just had a letter today from Sajid Jarvis saying well done for winning the Helpline Volunteer of the Year Award! He’s our local MP but I was quite impressed that he wrote. I might even see if we can get him to donate something for Sam’s #15B415 challenge! Someone might want the normal bottle of wine that gets sent through, signed!

Postscript:

So not much to add since what I wrote above. Everything is still on track, and the sleeping tablets are continuing to help me to cope with the lack of sleep…although this week has been exhausting (but due to sorting my dads house all weekend and lots of wallpaper stripping!). I’m still waiting to hear whether my stem cells from first time round are viable but will hopefully find out next week….it’ll be a massive relief if they are!

In the meantime, I’m feeling pretty positive about the #50KB450 fundraising at the moment. We’re nearly at 10% already, much helped by asking people to donate instead of sending me bday cards this weekend! I’m also sending out lots of letters to businesses that I know to see if they can help as that’ll be my easiest way of raising money! Sam is doing really well with his #15B415 challenges (he’s raised over £1000 himself!), and all the other family and friends who have got involved have done amazingly well already, with more coming in all the time. I feel ever so humbled by how much people have been prepared to do!

Multiple Myeloma Podcast

Hi There,

I’ll be teaming up with my buddy Kenny Capps for a cool podcast on everything thing myeloma. We hope to give a different outlook on topics and what is on the mind of many young adults affected by the disease multiple myeloma.

More details to follow soon.
Email me for more information-
madaboutmyeloma9@gmail.com

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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.

 

Time

How do I express what it is like to live a life that feels so foreign to anything I could have ever imaged for myself? The last several months have been a whirlwind of emotions (nothing new, sadly); but something has changed in the way in which I process them. I have been quite happy and hopeful at times – actually seeing progress – or opportunities missed – coming back around.

I love my children, more than I can ever say with words, so maybe that is why I find myself – by any means necessary – seeking safety to provide them opportunities to thrive. Maybe this is why I take failure so hard, I know in my heart I am trying with everything that is within me, to change the course. There is a complete disconnect between the woman I thought I was, the family I came from, and the course in which life has taken.

I have had to accept that no matter what I say or do to help does not mean that there will be a positive outcome. Sometimes you can run a race until your heart stops and still come in dead last.

To almost lose a child on multiple occasions, regardless of doctors, therapists, family or friends well-wishes… sometimes there is nothing you can do to change the course of something that began years before you had any awareness.

Working on a film provided me with some understandings – not solutions. I wanted to reach her, inspire her own passion to help others. I am sure our story can help others (cautionary tales being what they are), but most of all, I think I wanted to stop the hands of time. So many families have lost their children to disease, mothers write memoirs about children that take their own lives… I swear to myself I will not lose my girl, but I cannot control what I do not understand. Part of me hopes that spending time inside the darkness that inhabits the mind of a traumatized young person can somehow lead them out towards light. I foolishly hoped that my ‘faith’ would inspire motivation to fight for a better life. Some illness carries with it… a host of problems that cannot be seen unless you are closer to it. Living on my own, is not something I imagined would be a part of my ‘story’. I crave having a hand to hold when I am overwhelmed, or a hug, or a restful sleep. The last time I remember relaxing, was after my diagnosis in 2013… I was a resident of Barnes Jewish Hospital in Missouri and getting that second stem cell transplant. I remember it was the most relaxed I have ever been… I was alone, but I felt close to God somehow. I used to crave the company of people, friends, family, being a caretaker, nurturer, and a clown for the sake of love or friendship… I am not sure where that person is now.

I cannot rest, I can barely sit still on most days. My mind is weighed down with the uncertainty of multiple myeloma resting inside of my bones, and always wondering if any small sickness is related to the cancer. People cannot “see” myeloma and every doctor seems to forget I have it, until they open my medical records. My finances are a mess with student loans & medical bills that rival the cost of a home, and I would work more if I could – beyond caretaking. Seems impossible to rise above the ocean of debt to breathe freely. If I were alone, my benefits would be adequate – for that I am grateful, but I am responsible for others. My mind is weighed down with what doctors instructions… remain stress free, rest, care for my body, eat right, rest and maybe it will extend the cancers remission. Oh and my daughters doctors have a list as long as my arm that I am supposed to be working on as well. It is almost a guarantee the cancer will come back – especially if things do not improve. Who in this world can be stress-free anyway? What does a mother do if she wants to live, but she cannot inspire her own child to seek recovery for her own sake? A child that only complies to appease a mother, is not living, the fight MUST come from within the self.

How many times will I arrive to discover an unresponsive child, how many times will I need to experience forms of death, and not understand what for?… My faith as a young person was strong; yet I was naive; blind, and insanely hopeful. (I would give the world to feel like that again). Now questions plague me at night. Nothing I was taught or learned has prepared me for the damage that occurs to a soul when faith and belief does not match up to reality. I could have lost her again this week – and each time she comes home; I think she is inching towards recovery because I remain close by, and I stay vigalent… It is hard to admit there is a blindness when it comes to my love. Addiction comes in many forms.

I would ask for well-wishes, but I know that nothing can be done until she is ready to fight it. Time passing is my only constant… The world spins around me, as I stand still, waiting at doors – the wooshing sound of happiness slipping from my fingers, time spent waiting and wishing for what was lost to be found. (or wondering if happiness was ever real at all). I am not trying to bum anyone out, but I must find a way to get back to living a life that matches my soul; so my children have a future to hope for.

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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.

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