Today Will Not Be Here Tomorrow

Meanwhile, someplace in the world, somebody is making love and another a poem.”

From Figuring by Maria Popova

Periwinkles, ducks, and clouds. Hood River waterfront on 3/20/20.

I fed hummingbirds all winter. Each time I thought they had departed for a warmer climate, they would appear and take a big slurp from the feeder.

I received two petunia plants in September. They continue to flower. I did not tend them. Still, they survived outside, in northern Oregon, on relative humidity and indirect light.

This is unusual.

In late January, following our return from a Christmas vacation in California, the first news of the coronavirus came from China. The world scoffed aloud, “Hmph”. Now, barely two months later, it stammers a collective, “WTF”. The upheaval is astounding.

The Columbia River looking west from The Hook in Hood River, OR. 3/20/20

Worldwide, half a million people are infected with the virus. More than 25,000 have died. The travel industry needs a ventilator to breathe. Cruise ships are floating petri dishes. Professional and amateur sports suffer in an induced coma. Many states have closed schools. Shortages exist for supplies of hygiene related products. Restaurants across much of the USA shutter their doors in adherence to social distancing. Mayors and governors issue sheltering in place edicts. Bustling downtowns look deserted. The stock market plummeted to record lows, millions are suddenly unemployed, and everyone with a 401k is hyperventilating.

My ukulele-a Mike Pereira “Cali” Baritone.

To the rescue, the federal government …? Wow, where to begin? The kindest thing I can say is that our president’s leadership has been sub-optimal. Evidence of the country’s unpreparedness is matched in degree only by the administration’s improvised responses that, thus far, promise but don’t deliver. Congress, prone to partisan dithering, slogs along. Emergency relief is imminent, albeit late. More will be necessary.

Are we all going to die? No. But, it’s possible someone we know will. Better leadership and foresight could have minimized the number.

I belong to one of the high risk groups. I am older. And, I have a suppressed immune system due to my cancer, multiple myeloma. Fortunately, I am a home body by nature. Social isolation is not a personal hardship. I read, I write, and I play my ukulele.

I am 12 years out from diagnosis. Like those petunias in my front yard, I exist on the relative humidity of my good luck. My anxiety about the Covid-19 virus is tempered by experience. The grim prospect of mortality is an acquaintance. I am no more susceptible to contracting the virus than you. However, I may have a more serious response should it come my way. So be it.

Closed the waterfront to walkers on March 22nd

Our fragility as a species is revealed by a microscopic organism. Knowing better, we nonetheless chose to be unprepared. The current administration dissolved pre-existing institutions established for a menace such as Covid-19. Now, we pay the price for that choice.

Similarly, we will pay a price for our indifference to the threat of climate change. It’s cheering to see hummingbirds visit during the gloomy days of winter. Remember, though, this is unusual. It’s not equivalent to the Australian brush fires or 69 degree temperatures that recently occurred in Antarctica. But it serves to remind me, overwhelming evidence exists of this threat to humanity.

The coronavirus teaches us that calamities occur that effect all of mankind. It also shows that we can respond unilaterally for the greater good of everyone. We will survive Covid-19. Climate change will be a much more formidable challenge. Let’s hope we choose to be better prepared for its consequences than we were for this disease.

Now, a song … 

Today Will Not Be Here Tomorrow

The latest numbers …

The Drill

Vitamin D and coronavirus

I’ve been cautious, very cautious, about writing a post on supplements that might help reduce the risk of being infected with Covid-19, for what I think are obvious reasons!, but this morning I came across an interesting new study by the University of Turin showing that hospitalized coronavirus patients here in Italy have very low levels of vitamin D.

Low levels of vitamin D might also explain why the virus has been killing mostly elderly people here in Italy…

At any rate, this news just got released, so I couldn’t find any articles in English, unfortunately, but you can use Google Translate, if needed. Here’s the link to the article (one of many, but all in Italian, different newspapers): https://torino.repubblica.it/cronaca/2020/03/26/news/coronavirus_studio_dell_universita_di_torino_assumere_piu_vitamina_d_per_ridurre_il_rischio_di_contagio-252369086/?fbclid=IwAR0Vya1oRADjlHUYT6iN2tGecrvbMHmIlf8r5fvN_fpWNMQcyvpDyEYnNuA

Taking vitamin D is NOT being suggested as a cure, of course, but it might reduce the risk factors for contagion. That’s good enough for me!

As we know (or should know!), healthy vitamin D levels are important for myeloma folks, too, so taking it can only be beneficial to us…in the recommended doses, of course.

Well, this is a bit of useful news (at least, let us hope so!). I’m going downstairs to swallow a dose of vitamin D right now…

What we’ve been up to.

Fortunately, my son Zephyr is able to work at home. It’s a bit of a challenge as he does video production but he’s managing.  Sachi is able to also do the library stuff online too which is mostly ‘chatting’ with students about research stuff.

I’ve read 4 ebooks in the last week. It’s a new author and character I really like.

Here’s the link. 

 The character Emma is an FBI agent who’s really good at what she does. The books are paced well and the mystery is good.  Now what?? I’ll have to see what else I can download.

The weather hasn’t been good enough to work in the yard but maybe in a few days. Everyone is getting a bit of cabin fever I think.

Our pantry is still well-stocked but I am waiting on an order from Costco for laundry soap and dishwasher soap. Both were supposed to be 2-day delivery but it’s now day 4 and it hasn’t shipped yet. We don’t really want to hit up Costo so I guess I wait and see.

I canceled our camping trip to New Brighton in April. I just don’t think everything will reopen by then and even so, it’s probably just too risky. Disappointing to say the least.

We had tacos last night and tonight is kinda freezer cleanout. I have some spanokopita to use up. I’ll make a salad with the last lettuce I have. I’ll probably need a store run for some fresh stuff by Monday.  Maybe I’ll go Sunday or Safeway has the senior time Tuesdays and Thursdays, so I could do that.

the sun is peaking out so that’s a good sign that it might end up a sunny day.

 

Iso-shock

Come to my arms tonight, you and me together under electric light. She will dance in the poisoned air, just you and me forever by the motorway there. Stay together. Let’s stay, these days are ours.
Stay Together – Suede

I can’t help noticing, these last few days as the world has fallen apart, that my emotional reaction isn’t the same as many people I speak to. It’s not that I don’t care, or I’m not worried. I guess it’s just that the sky fell on me a long time ago, and for better or worse I am at peace with the world.
My friend Tom posted some practical advice on living in isolation, which I’ll paste to the bottom of this blog. Some of the adjustments everyone is having to make – being trapped at home for months on end – are hardly new to the likes of Tom and me. That said, covid isolation isn’t the same as a myeloma diagnosis. For most people it isn’t going to be terminal, it won’t be painful, and it won’t involve endless chemo and all that bollocks. But, it is certainly traumatic. Here’s a couple of thoughts from me, on accommodating trauma.
Firstly, recognise that in large part the adjustment is a form of mourning. Mourning for the world we all imagined which turns out not to be the world we actually inhabit. A month ago we all had plans for 2020. A 2020 where you can go to the pub, and I can go to Mexico. We envisaged time with friends which we will be deprived. We envisaged events and accomplishments that won’t happen. We thought the world was just a nicer, more benign, place than it turns out it is. When I got my myeloma diagnosis, Marisa and I had been planning to move back to New Zealand’s Motueka Valley, buy some land and build a house. We had photos of the area on our kitchen wall. I had a long list of “thoughts for our place” stored on my phone. For a while I found it extremely difficult to accept that that plan, that fantasy, would never happen. I had to mourn for it, and let it go. In the end, I waited until Marisa was away one day, and then took the photos down, replacing them with pictures of us having fun. I still have the list on my phone – I’ve never been able to bear the thought of actually deleting it. But it is buried somewhere I never look at it.
For better, or worse, this future is the only one that exists. Anything else we imagined was fiction. Biology – evolution in the form of genetic mutation – brought us here. No-one caused it. It has no “meaning”. It just is. It’s not even unique: people have lived through plagues and pandemics before. In 1918. In the 14th century. In the new world, when European explorers introduced smallpox and syphilis. And there have been many other times of hardship, war, disaster. It’s not special. We’re not special. So, we never thought our generation to have to live through and deal with something like this. Big deal. We were wrong. A large part of the anguish is simply that it isn’t as nice as we wanted it to be.
It will take some time to let go. We might have to let go of 2020; of our social habits; of our established balance of freedoms and social responsibility; of our past economy. It’s profoundly unsettling to suddenly be without a clear picture of the future. But it helps to realise that a lot of the pain we feel isn’t because the life we’re leading is actually that bad, but because of the gap between actual life and previously-imagined life. Lots of good things may even emerge from this experience: family relationships; a more equitable economy; a more sustainable lifestyle. Who knows. Those things don’t make the trauma OK. Covid isn’t “happening for a reason” any more than my myeloma is. But instead of being distressed by the gap between reality and fantasy, one can be happier recognising the positive aspects of the world as it actually is. To do that, first, you have to let go. It isn’t easy. It took me years. But tomorrow, the only world we have will still be this one. Either we make the best of it, or we waste our lives. Covid is random bad shit, let’s not pretend otherwise. But you can still grow through it. Bad shit can be good compost.
And secondly, recognise that it is hard being scared. Scared for loved ones, scared for ourselves. But the good news is that fear fades, if you give it and yourself time. I’m not scared any more. If I was scared, I’d have long ago lost my mind. If my time were to come in this pandemic… so be it. That doesn’t mean I’m taking any risks. I’ll take all the precautions I can to stay alive. I didn’t go through all that toxic chemo just to let myself go now because I can’t be bothered to practice good hygiene and keep some distance. Go easy on yourself. It’s OK to be fearful. It’s OK to have a meltdown. I’ve had plenty of those, over the last few years. Don’t beat yourself up about it. Be kind to yourself. At the risk of sounding hippie, love yourself more and judge yourself less. Focus on the joy of today, however compromised today is. Over time, the fear fades.
It’s easy for me to say this. I’ve had years to accommodate my personal trauma. It takes time. It isn’t easy. It hurts. But it is possible to transcend.
Stay safe. Love to you all.
And here’s some practical advice from Tom:

Some advice on self isolation

7-years ago I had a stem cell transplant. This meant that in the aftermath I was kept in an isolation room at UCLH for two months, and then when deemed strong enough sent home for a further 7 months where I was not allowed to leave the house and had to operate the kinds of hygiene techniques we all need to do now. I thought it might be useful if I shared what I learnt about staying safe and sane during that period. All the below are connected and overlap.

1. Firstly (and this is difficult) you need to adjust to and accept your new reality. Don’t fight it, live in the moment on a day by day basis.
2. Keep clean, continue to regularly wash hands even at home. Have a stringent hygiene routine. Have a shower every morning, keep good oral health as there is a weird connection between mouth infections and your immune system.
3. Go to work at home. Have a daily routine that you follow. It doesn’t literally have to be ‘work’, but keep a daily schedule of things that you do at the same time every day. I realise this might be difficult for some if there is no quiet space at home, but routine is really important.
4. Change your Jim jams in the morning. This sound silly but when you are staying at home it’s tempting to slob around in the same clothes you slept in. Don’t it’s unhygienic and bad for your self esteem.
5. Keep fit. If you are fortunate enough to have a house with a corridor use that to walk up and down or use your stairs. You can also get small pedal exercise machines off amazon for around 20 quid that sit under a chair. Stretch etc. Build this into your daily routine.
6. In family situations be mindful that everyone is going a bit nuts. Learn to forgive quickly and don’t nurse grudges.
7. Keep connections to friends and family. Share your feelings and experiences, let people know how you are you.
8. Eat as healthy a diet as you possibly can. Take supplements extra vitamin b and d.
9. Have a go bag ready if you need to go to hospital, a weeks worth of clean clothes, book or kindle, a travel kit of toothpaste, soap (yes really), deodorant a phone charger.
10. If you have a hobby it helps, if you haven’t this might be the time to develop one…

The Bridge To A Cure For Multiple #Myeloma!

Picture


The American Society of Hemotology 2019 meeting may well be one of the most significant and productive ASH Conferences I have attended. Clinical trials using 4 drug combinations, and combinations with new drugs like Ventetoclax and Selinexor, and finally the clinical trials with CAR T, BiTE’s, ADC, and BCMA as a target all look to be part of the Bridge to a CURE!

From the patient’s perspective, it is always disappointing to see that the cure continues to escape us, but building new segments of the bridge to a cure is the second best possible outcome. What is the bridge to a cure? At two of the presentations I attended, Dr. Raji Vij of Washington University mentioned using combinations and the new drugs to bridge the patient to the next new treatment or a possible clinical trial. Dr. Sikander Ailawadhi of Mayo Clinic Jacksonville said the same thing about a drug he discussed called CLR131,(To view a Cure Talk 3/24 presentation on CLR131 CLICK HERE) and there was a poster on using SPd after failed CAR T as a bridge to the next clinical trial.

Although the cure is not apparent at this point, as long as we keep providing the next segment of the bridge we just may be able to live to see the CURE. In the past the segments of the bridge, even for breakthrough drugs like Daratumumab which had a ORR(overall response rate) of 24% with a PFS(progression free survival) of just 1.9 months, and Selinexor with a ORR of 26% and PFS of 3.7 months, improvements were marginal  and not overly significant. The new clinical trials like the ADC(Anitbody Drug Conjugate) GSK2857916 (Belantamab Mafodotin) in patients who had previously been treated with daratumumab, the ORR was 38.5%; with a PFS of 7.9 months, and finally the most seasoned CAR T study bb2121 shows ORR of 84% and PFS of 11.8 months. The point here is the ORR and PFS continue to improve giving those in the later stages of myeloma a bigger window to find the next treatment. The BiTE’s, ADC, and combination target CAR T(eg. BCMA and CD38) show even better initial results, but are just too early to call. 

Another key we have found is if a drug like Daratumumab works in the heavily pretreated patients, when we move it to earlier in the disease progression and in combination, we achieve outstanding results! Who would have thought a drug which had a PFS of 1.9 months would be the biggest hit at ASH19. It is being presented as a combination with everything and shows improved results. It seems all “ Things Go Better With Darzalex!” What happens when we move a treatment with PFS of 11.8 months to earlier in the disease progression? Will it be all “Things Go Better With bb2121, or BiTE’s, or ADC, or AWC, etc”? 

The momentum has shifted to the patient from the disease! The game is not over, the bridge is not built, but an end is in sight!

Good Luck and May God Bless OUR myeloma journey. For more information on multiple myeloma CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1


Simple Simple Sunday

Well, life certainly has slowed down for most everyone. It’s such an interesting phenomenon that I’m sure sociologists will be studying this period of time for many decades to come.

We’ve been taking our morning walk and in the afternoon just walking around the property. I’m planning on walking down our hill to the mailbox or even the post office when I get up the gumption to tackle the hill coming back up. It’s about a 45degree angle so quite steep.

This week is the bedroom zone. I took down the velvet curtains and put up the light white ones from Ikea, washed the windows, dusted and watered the plant in there. I think I’m going to hang out the quilts in the sun today too.  It is supposed to rain again but today is sunny and nice.

Some meals I’ve been making:

  • turkey chili with white beans plus some cornbread and a big green salad
  •           pizza that was a sourdough crust(and quite good, I might add) with sausage, mushrooms, peppers, and pineapple
  •         buckwheat crepes with fruit
  •         penne pasta with chicken sausage,  spinach, and cheese.
  •         Next week:
  •         Brinner
  •         Grilled chicken with potatoes and a vegetable
  •         Tofu burgers
  •         ????

Well,  all in all, a nice day.

Another Long Absence

It has been almost a year since I updated this blog.  I apologize for the long absence.  Fortunately, since then I have continued to be in remission from the MM, so there has been nothing new to report.  That is the main reason I haven’t updated this blog for so long.  By the way, yesterday was the 8th anniversary of my stem cell transplant, so Happy Birthday to me!

While I am still doing

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Vigilance and Vindication Overload!

3.20.20

Hello Everyone!
I’m sure you’re as mentally beat up as I am. I almost wasn’t going to post, but I just didn’t want to break my commitment to post on my symbolic numerical days. I love that I’ve been writing this blog for almost 10 years now, and CoronaVirus isn’t gonna bring me down :))

I have so much to say, but I’ve probably said it all already… said it, written about it, a million times over! Simply put, this awful Virus has totally Vindicated my OCD smart sanitizing lifestyle. I wouldn’t have survived all the years of Myeloma and chemo treatment’s ravages on my immune system, if I hadn’t cleaned and sanitized and wiped off basically every public contact surface in my life. I should have bought stock in isopropyl alcohol manufacturing companies! All the cleaning and sanitizing instructions all over the news, social media, from friends, family, public service announcements, etc, IS EXACTLY WHAT I HAVE BEEN DOING AND PREACHING for over 10 years!!! Actually for most all my adult life. I’m just a bit smarter, or have more common sense, then most. Sorry, not sorry, but it’s true. All this cleaning and sanitizing and being aware of deadly Cross Contamination, is JUST PLAIN COMMON SENSE CLEANLINESS!!! And I’ve been doing it ever since forever with animals and working with the public.

Unbelievable the world needs to “learn” 
how to wash your hands
and how to be clean!
I’m so ahead of the curve and trending before the trends!
I used to make these personalized scented Isopropyl Alcohol sprays
for my kids and their friends waaaaay back in 2000’s,
They loved them. Friends would beg me to make them a bottle!
And all this…. 
Waaaaaay before Myeloma!
And waaaaaay before CoronaV!
I made these when the kids went on Spring Break trips,
When they moved out,
When they went away to college,
And for around our house.

Wipe it all off, if it has public cooties
Wipe it off so things don’t cross contaminate
Don’t touch dirty public cootie surfaces directly
Don’t cross contaminate things (food, surfaces, etc)
Wash Wash Wash
Clean Clean Clean
If you touch this, don’t touch that
Keep your dirty paws away from your face
Don’t touch public surfaces directly, think about what you touch where
Clean off, sanitize anything that comes into your house or private space
Wipe Wipe Wipe it off
Don’t wear public shoes in your house
Don’t wear dirty germy clothes in your house
Be super clean in your kitchen
Wipe down things that involve food, utensils, your sink, your refrig, etc
Don’t cross contaminate
I practiced clean hygiene forever. That’s why we had very few illness, no food poisoning, and no animal Salmonella (we had reptiles for years!), not to mention all the ranch issues. But I have always thought our Animals were cleaner than Humans LOL, as we keep everything so clean. Jim used to clean the horse arena several times a day,…

I’m beat up from this life…
From my poor hubby having seizures on Monday…
From CoronaVirus overload
From Germ transference fear overload
From trying to get normal household supplies exhaustion
Exhausted from trying to find what I need, and everything is sold out online

With all the “shelter in place” policies, I cannot believe online ordering and delivery is not the standard practice now! I’m so sad there isn’t grocery delivery or Walmart grocery pick up anymore.
Doesn’t that make the most sense now! All the people crowding into grocery stores, standing in lines, defeats the “social, physical distancing” we’re all supposed to be doing! I am not going to stores, I am not standing in line… it’s all so hypocritical and ridiculous!
How can Costco and Walmart be sold out on everything, even with all the Hoarders?!
This is just insane!

But I can’t help be a little humored that is going on… Not humored by the CoronaVirus! That is truly scary. Just humored by all the conversation about how to stay clean and sanitary now. Everyone is just now doing what all us cancer patients have been doing all along to stay alive and protect ourselves from germs and illnes.
I’ve lived the cootie free Bubble Life, and Shelter in Place life forever now it seems… this is my life, so life has hardly changed for me and my family. I don’t ever do much socially, or do much in public, or go many places since my Myeloma diagnosis, so no new adjustments for me. My homebound, protective life is nothing new :))

Found this the one time I went to CVS
before the “Shelter In Place order”
Take care, be careful, be vigilant, and feel proud how clean and protective you’ve been of yourself and loved ones way before CoronaVirus!

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It’s all too much…

Well, no Frugal Friday here. It’s more like  WTF Friday. Hey, that’s catchy!

Really, I ‘m not sleeping very well and actually took an Ativan to sleep the other night. I

rarely do that and I guess the stress is building.

We had a nice walk though, this morning and then I went into our Holiday Market. There was no bread( I didn’t need any anyway), no pasta, sauces, no flour, etc, no regular milk. But I actually got what I needed which was maple syrup, sliced cheese, applesauce, tortillas, organic milk, and some other stuff. I wore a mask in the store as well as gloves. The clerks were very with it and asked did I want them to use gloves and I said yes. So they are being very proactive.  That should be the last shop I need for at least the next 2-3 weeks.

Everywhere in California, there is a mandatory ‘shelter in place’. I think it’s a good thing at least for the next 2 weeks. It is scary though, to think about this in the larger picture.  We still have our reservations for New Brighton in April but we will cancel as the California park system is shut down anyway. That’s disappointing as we missed last year and now it looks like this year too. Oh well, can’t be helped.

I even saw Ikea is closed so that’s something.

Finnie is still doing poorly. My daughter did take him to the vet and he’s on antibiotics, but he’s not eating and I’m guessing he’s not long for this world. Really upsetting since we’ve lost all our pets in the last 8 months. They were old but still. I still hope Finnie can pull-thru.

I’ve been freshening my sourdough starter from the fridge and it looks good. I used some to make some dough for pizza tonight so we’ll see how it rises to the occasion.

I’m not sure when I’ll do another post. I feel deflated about everything.  But I’ll post when I get back in the mood.

 

“Nessun dorma”

An Italian tenor, Maurizio Marchini, who lives in Florence, joined the nationwide flash mob a few days ago. Standing on his terrace, he sang “Nessun Dorma,” from the final act of Giacomo Puccini’s Turandot.

So beautiful and inspiring…

Nessun Dorma means “Let no one sleep.” And, of course, we all know that the famous cry “Vincerò” means “I will be victorious.”

A very apt choice for these terrible times…

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