Comorbivid

Sometimes you look so small, need some shelter. Just running round and round, helter skelter. I’ve leaned on you for years, now you can lean on me. And that’s more than love, that’s the way it should be
Protection – Massive Attack

Remember the #1 rule of staying alive – do what the doctors tell you to do

Right now, you’ve got as many worries as I. You probably don’t need much update from me. But here goes anyway.

I have spent the last couple of months feeling like I’m in the eye of the storm; trying to make the best of my situation and be a positive presence for my family. I had decided that going back to work is not a reasonable prospect, and that I need to focus on my mental outlook, facing down the demons in my mind which constantly question whether or not I am being productive. While life for everyone else continued as normal, that was quite a challenge – Marisa and the boys coming into the house after work/school and me having little to show for my day. But… I have been making quite a good job of the adjustment, I think. And anyway, the whole issue has now been overtaken by events.

We escaped to the sun (Lanzarote) for a week in Feb, which was wonderful. Though our plans for Easter (Mexico and Belize) have collapsed. If ever you wanted evidence of why its wise to live for today, consider our snatched holiday to Namibia last summer. An opportunity that had a very narrow window and which we could easily not have grabbed. So glad we did. And who is worrying, now, about money spent in the past?

There is good news on my health. My light chains unexpectedly dropped from 250 to 160 last week (and the κ/λ ratio from 100 to 60). And rather than the prospect that each month’s appointment could hail the start of new treatment, we’ve moved on to less frequent visits to the clinic, and an assumption that my disease might be in abeyance for, if we’re lucky, a couple of years. Of course, this could change as soon as my next blood test. No one knows why my numbers moved, or what it really means. But welcome news is welcome news.

So, as covid strikes, I consider myself very lucky indeed. One year ago I was in and out of hospital several times a week for transfusions. Two years ago, I was sufficiently weak that flu almost finished me off. Now, I think I am much more robust. However, I can’t be complacent. Public Health England’s current advice (as at 17 March), puts me in their category of “people at even higher risk of severe illness from COVID-19”, and advises me to apply “rigorous” social distancing. My medics are reasonably hopeful about my current immune function, but have warned me that my diminished lung capacity (due to my busted skeleton) means that I’m certainly more vulnerable than I would otherwise be. So, reluctantly, I’m going to put myself – and the family with me – into a practical (not obsessive) degree of self isolation, as far as possible, from this weekend. We’ve already warned the kids that, even if the schools are still open by Monday, we will be taking them out. I have not enjoyed telling them that they may be unable to see friends/ girlfriends for months.

To be honest, though, my nurse told me today that they don’t believe it is achievable for many of us to actually avoid covid – we’re probably going to get it. What we do need to do is avoid all getting it at once.

In some ways, I’m well prepared for pandemic life. I’m used to living with no confidence about what tomorrow may bring. I’m used to periods of isolation. I’m used to listening to medical advice regardless of how I subjectively feel. I reliably wash my hands. Maybe I will find it easier to adapt than you will?

I’m very worried for my fellow mmers. As I walk round the park I look up at the hospital windows, behind which I know there are some very vulnerable people who will not survive if covid gets into their wards. And I’m worried for all my medics – who are exposed to risk by the nature of their work.

Right now, this feels like the apocalypse, and I am fearful for all of us. Not everyone grasps the severity of the situation and people will put themselves – and others – at risk by failing to adopt responsible behaviour. A death rate of 1% somehow doesn’t sound so high. But that’s not the risk. The risk is that something like 20% of covid infections require hospital treatment, and if everyone is ill at once, the hospitals will fail. I have relied, for many years, on my confidence that, whatever happens to me, I can scurry down to Kings where they will look after me. None of us can have that confidence, at the moment. According to the BBC the mortality rate in Italy is currently running near 8% – and the difference must be, in large part, that many people who might have survived had they received first class hospital care, were unable to access it. That’s the risk we all face, and no-one should underestimate it.

Beyond the immediate, the impact is unimaginable. Already I know many people, in very different situations, whose livelihoods are drying up – people being laid off, or simply not given any more work. Others being told they must accept dramatic pay cuts. After I post this, I must go down to the community centre where my last task, before going in to isolation, is to tell our users, and staff, that we must close. None of us can know what the future holds. Our household is already making a big adjustment to lost income, and how we will budget and balance our books in the months ahead. I’m conscious we have a lot more fat to live off than many.

Let’s hope my worst fears aren’t realised, that the plague passes over us in a matter of months rather than longer, and that the economy is revivable on the other side. (If I were in government I’d be applying a helicopter-money or a “universal basic income” policy already. The longer those in power fail to do so, the more unnecessary suffering will accompany the unavoidable suffering.)

So… massive love to you all. Don’t fret about me – I think I’m as well placed as most to cope and survive. Spare a thought for those in more vulnerable positions. Be a good neighbour. Do you know who, on your street, will be isolated and alone? And what are you going to do to support them? And most important of all – the mantra that has kept me alive for many years now:

Do what the doctors tell you to do.

Do what the Chief Medical Officer tells you to do.

Don’t let complacency and disbelief make you a risk to yourself or those around you.

Look after yourselves. Look after each other. And don’t forget to wash your hands.

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Virtual museum tours

If you’re at home right now because of the (necessary!) quarantine and don’t know what to do with yourself, why not take a virtual tour of 12 famous museums, including the Uffizi Gallery in Florence?

I’ve never been to the Guggenheim in NYC, so I’ll take its tour later on today. First, I have to have my daily chat/update with my neighbors to make sure they’re all okay. We chat from our terraces, of course. Then I have to put in a grocery order from a lovely little shop just down the street from us…It carries only local produce, mostly organic. This little shop has saved us in this difficult period. Then, after cleaning the cat litter boxes, I’ll be ready for a museum… 😉 

Here’s the link that will give us a moment of “escape” from Covid-19: https://www.msn.com/en-us/travel/travel-trivia/stuck-at-home-these-12-famous-museums-offer-virtual-tours-you-can-take-on-your-couch-video/ar-BB119nm6

Enjoy!!!

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And change……

So unsurprisingly the Coronavirus has meant a total change in our life. Where to begin?

Well yesterday I was back to see the consultant. After my numbers going down the week before last, last week they went back up to 9.2. I’m sure there must be a better word than rollercoaster! Basically it means the graph shows my numbers as roughly staying the same. Which is definitely better than them rising. Before this week, I think they would have been considering hitting me with DT-Pace but because this blasts your immune system and would put me at greater risk of contracting Coronavirus, we’ve been told that both this, and Stem Cell Transplants have, unsurprisingly, all been cancelled for the foreseeable future.

So of course our next question was, what does this mean for me. The consultant is now happy, given the current climate, to see if the daratumumab can keep them at the current level till things blow over. Great. If it does. But what if not? Whilst the previous two options are now off the table for the time being, apparently if my numbers rise, the next option would be a drug called pomalidomide. This is in tablet form and in the same family as revlimid which kept me in remission for a long time. I tolerated that well although it is likely that my neutrophils will decrease which means I will still have lower immunity- so isolation again will be key.

I have to say I’m quite relieved. With everything that has been happening, we thought it was unlikely they’d still do transplants but I was concerned that there would be no alternatives and that they’d have to leave my numbers to just increase, risking bone damage and/or kidney damage. So I’m really relieved that this isn’t the case even if it does mean the whole situation has changed again. Better a different course of treatment than no treatment, or a treatment that would put me at major risk.

Last week Nick and I also started to talk seriously about what the virus might mean for our lifestyle and whether we were happy to wait to be told what to do or whether we should think ahead. We decided that we were getting more and more concerned about the risk that we were facing especially with the kids being at school and clubs every day.

Nick’s company had already contacted him at the beginning of the week to say he had been put on the ‘at risk’ list due to my myeloma and the treatment I’m on. This meant that he didn’t have to go to the same meetings, hospital visits etc that might normally have been part of his role, nor travel to London for unimportant meetings. So if he stayed off work, but we kept the kids at school, it felt like we were doing things in a very half arsed way!

By the following day things had moved on and most of his company was being told to work from home where possible and so we talked again and decided that we were going to email the school to tell them we’d be withdrawing them.

The kids haven’t loved the decision if I’m honest because they can’t see their friends but they have understood why we’ve done it. I’m not sure they particularly love our commitment to home schooling them – lol. We’ve been so lucky as the school has been amazing in their support in terms of a) agreeing they would support the decision and b) agreeing to get teachers to send work home each lesson. We’re ever so proud of how the kids are doing though – they’ve been following lesson plans each day and doing their homework. It’s not easy when you don’t get to see your friends at all at that age (or at my age!). I’m sort of hoping that schools close soon for their sake – they won’t feel so separate then. At least now most clubs have finished so they aren’t worried about missing out there.

At the same time as withdrawing them, Nick and I made the decision to self-isolate. Me totally and Nick as far as he can do whilst supporting us. We’re now 4 days in and I can promise you it isn’t easy so I can understand why the government wanted to wait to ask people to do it!! It’s amazing how many things you forget that you ‘pop out’ to do. Birthday cards, loaf of bread etc.

It’s also amazing how many things come into your home that have been touched. Most of us have probably seen the change in behaviour of amazon and Royal Mail but have you thought about wiping down packages when they come in. And what about your online food shop that so sensibly keeps you in isolation? Should every packet be wiped down? Or kept separate for 12 hours to and sure any viruses have died? Have I just become paranoid? All mad when you start thinking about it, but think about it we all should. This is really serious.

So yesterday most British people heard Boris Johnson and his team tell us that people like me, with myeloma, should isolate ourselves for 12 weeks. We got there first! But it’s going to be hard. Very hard. Especially once other groups get added to this, which I’m convinced they will be.

I can’t totally isolate as I have to go to hospital once a month for my treatment. But it sounds like that’ll be ask quick and careful as possible and I’ll be set back home to get results via the phone and not face to face. That suits me now that they aren’t planning to change much or move forward with the SCT. To be honest I think I’ll need that trip to stay anywhere near sane!!

I’m sure there’s more but my brain has gone for now so I’ll stop boring folk!

Italy reacting to Covid-19

Italians have shown the world how to react to a quarantine and lockdown imposed by the spread of Covid-19.  Singing, clapping, dancing, and playing instruments from their balconies and terraces. This has been happening all over Italy, a sort of country-wide flash mob. For days now. Spain has picked up the message and is doing the same. It’s a way to feel united and also to help those who are alone and finding it difficult to stay indoors.

I have watched a lot of videos showing these impromptu Italian flash mobs–you can find heaps of them on YouTube–but the one that brought tears to my eyes towards the end (you will see why) is this one, prepared by Sanità Informazione, a healthcare-based newspaper.

This is instead a rather slick video on the notes of Italy’s national anthem, but it shows one of the prettiest towns on the Amalfi Coast, Positano, and I posted it mainly for that reason, to show how beautiful Italy is…

The flash mobs are happening in my neighborhood here in Florence, too. The other day, e.g., at the appointed Flash Mob time, I was out on my terrace, joining my neighbors in applauding and cheering the amazing, tireless work that our healthcare workers have been doing since this Covid-19 crisis began.

Italy has responded with determination and unity and, as one foreign journalist wrote recently, “This is why so many people through many centuries fall in love with Italy.”

Indeed. I am certainly madly in love with this country, and there is absolutely no other place I’d rather be right now.

As the current slogan goes, “Andrà tutto bene,” or “Tutto andrà bene,” which means: “Everything is going to be okay.” Children have been painting these words and drawing rainbows on signs and sheets that now are displayed on balconies in every city and town in Italy. I got this photo from the Internet, btw.

It’s a sign of hope…

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Cycle 4 Week 14: A chilly morning in the park

Sunday morning was pretty chilly (-2 C) when I was walking around before sunrise in the park. Unfortunately I really feel the cold due to my compromised immune system. My February monthly blood test results are encouraging. My cancer levels are 48 down from 50 in December. My Myeloma Specialist has increased the dosage of two of the drugs I take with my chemo, so hopefully my March results will be much better.

Overall I’m doing alright, eating healthy, and remaining positive each day.

Feeling Springtime in the air!

Cycle 4 Week 14: A chilly morning in the park

M protein (g/L) (if 0, then no cancer detected)
Jan = 50
Dec = between 47 and 48 (began chemo)
Nov = between 40 and 42
Oct = 29
Late Sept = 21
Early Sept = 16
Aug = 13
July = 6
June = 5


I have multiple myeloma and anemia, a rare cancer of the immune system. Multiple myeloma affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable.

From December 2019 I’ve been on Darzalex (Dartumumab), an IV chemo with Velcade (Bortezomib), a chemo injection + dexamethasone.

Steveston - Britannia ShipyardsSteveston – Britannia Shipyards

The post Cycle 4 Week 14: A chilly morning in the park appeared first on Fade to Play.

This is all very weird.

So we are home and not going out. I guess since it rained all day yesterday and right now it’s snowing I guess that’s ok.

My son was told to work from home. And my daughter is a librarian at Sierra college so I’m assuming they will tell her today to work remotely.

Our last kitty, Finnie, is sick with what seems like a cold but we can’t take him to the vet as it’s too risky for us so I hope he can recover on his own.  It would almost be too much if he dies on us.

I emailed my sister in Connecticut who has lung disease and she’s on quarantine as it’s very dangerous for her. She sounded good though. Her family is huge so hopefully, the grandchildren aren’t coming over.

We walked yesterday a little and then it starting pouring so we cut it short. I really needed to get out and walk so that was too bad. I will try again today if it’s pouring or snowing or whatever.

B has labs tomorrow so he needs to call and make sure he can go in to do them. He’ll need to glove up and put a mask on though.

This week is the bathroom zone if you want to follow Flylady. I had B clean the air vent and that was needed. I also cleaned as best I could behind the clawfoot tub. I can’t really reach it so I rubber banded a washcloth to a Swiffer thing and that seemed to work.

Still raining right now so no walk yet.:(

 

Finding Peace this Sunday

As I gather with my family and prepare for the next few weeks of quarantine, this song has been running through my mind.  I teach children in my local LDS congregation.  Last year we learned this song together.  I loved it from the first time I heard it.  We have all weathered the storms of life, whether it be financial difficulties, family and relationship struggles, or sickness and poor health, but rarely has the whole world faced the same storm together.  Today has been set aside as a day of prayer in the U.S.  My prayer is that we may all find true and lasting Peace in Christ.

There’s a Peace in Christ. When there’s no Peace on Earth.
There’s a Peace in Christ. When there’s no Peace on Earth. ( Please follow our Page.)
Posted by Chadchly tv on Saturday, March 14, 2020

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Covid-19

I have received messages from concerned blog readers, asking me if I’m okay. Today I’m posting just a quick note to say that, yes, I’m fine, as is my family.

I’m staying at home, and in fact I have stayed at home since the first few coronavirus cases appeared in Italy, therefore before the government reached the brave and difficult decision to impose a total lockdown here…

With a compromised immune system, you can’t take any chances…

But I have to go now. I am in the middle of my “spring” cleaning (the cats are exhausted from watching me zip around the house, cleaning and throwing stuff away, as you can see, hehe…).

I’ll be in touch soon!

Keep safe, everyone…and, mainly, wash your hands!!!

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Getting a little nervous.

All the schools are now closed down here in PlacerCounty. It’s getting really kind of freaky. I’m planning to go to the store this morning very early. Not for the TP and such just some extra things.   After reading some local Facebook stuff not sure if there is much left but I’ll check.

Just got back from filling my VW with gas and hitting up Safeway. At 7:08 am it was packed. What the hell?  Well, I got some produce and the ginger ale and bubbly water I was after. Crazy huh?

The rain has started so it’s going to be a stay inside day. I think I’ll make up some menus for the rest of the month. Plus I may download an e-book.

 

Five on Friday

It was a beautiful week here in Northern California. Yesterday was 75 degrees. It got breezy in the afternoon but still nice. It’s supposed to start raining Saturday and go almost a week with snow in the Sierras. Well, we do need it but the sunshine and perfect 70-degree weather is hard to beat.

We are exploring different places to walk, so yesterday we went into Auburn and had a coffee at Depoe Bay( which roasts their own beans) and then walked around. We went up to the Gold Mining Museum and looked around and then walked the sidewalks. It was nice and I was surprised at the different routes we could take that would add up to a few miles. So, we will do this again after the rain stops.

I’ve decided to stop going to the gym and just walk and pull out my 5lb weights. Even though Sundays are the lowest people day, I just can’t risk it.  We are in the high-risk group. I am concerned with either of my Adult children who do work in the public sector bringing something home but I guess that’s the risk. They do wash their hands frequently and are quite conscious of what this means to us.

Budget wise things are good. I have way overspent on stockpiling stuff but I just figure that’s a one-off for now. I do still need a few things like cat food for Finwe who is a very picky eater. We also had our bi-annual Allstate bill come in. For 3 cars it was a little over $1,000. Seems expensive. Even our old Dodge van was $290 for 6 months. It seems high but I like Allstate and we’ve had them for 40 + years. This is the type of annual bill that will have to be paid out of our savings as the regular income only covers monthly expenses.

I did request a form for UCD financial help since the medical bills in August are what is causing a headache. Especially since the August 30 bill is for the Cystourethrocopy when the Cobra insurance wouldn’t pay the full amount. That alone was almost $4,000 with our part being over $1300. So I’ll fill out the form and see what happens if anything.

Well, today is not a walk day at least right now at 6:30 am, maybe later.