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

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!

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

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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.

Cycle 3 Week 11: Enjoying a beautiful morning in the park!

I’ve been remaining calm and trying to relax over this month as there is alot going on with my health. I went to a park on a beautiful morning to enjoy nature and the fresh air.

Last month I received my Feb monthly blood test results and it was a bit of a shock as my cancer levels continue to rise. My cancer levels are now 50 from between 47-48 in December. I had hoped my cancer levels would drop and then remain low and stable between 0 and 2 with ongoing chemo for a long time.

I’ll soon see my Myeloma Specialist and should find out whether another chemo treatment is available. If the answer is no/not right now, I’ll remain on my current treatment and hope for the best while I wait.

Focused on happy thoughts and positive vibes.

Cycle 3 Week 11:  Enjoying a beautiful morning - No time for stress!
Self-portrait: A beautiful 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
May = between 3 and 4 (post-chemo)
Apr = 3
Mar = between 1 and 2
Feb = 3
Jan 2019 = between 5 and 6
Dec = between 5 and 6
Nov = 11
Late Oct = 27 (started chemo)
Early Oct 2018 = 48


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.

End of the day on Granville Island
Sunset on Granville Island

The post Cycle 3 Week 11: Enjoying a beautiful morning in the park! appeared first on Fade to Play.

The state of affairs.

Things are good this week with 2 doctor appointments down.

B had clinic on Tuesday and I drove him to UCD med center as it was an early appointment so there was traffic.  He’s back on prednisone for a rash but it is minor and seems gone now.  I sat in the car dealing with the financial fallout from the Cobra.  What has happened is this: His group insurance ended as of 7/31 and that’s when we initiated the Cobra thinking at $700 a month that would take care of all the bills.

Ha!!! NOw UHC Cobra is still saying because he was Medicare ELIGIBLE they won’t cover the full costs. WTF????? Well, long story short, after numerous calls we are on the hook for the August appointments.  I made payment arrangements while I was waiting for him to finish up at clinic.  All his appointments from then on were covered by Medicare. But we still were paying the Cobra till actually just the end of last month( January). Not sure this was necessary but open enrollment hadn’t quite started so even though we could have signed him up with special circumstances, we just left the cobra in place.

All I can say is if you’re ever faced with losing group coverage and have to go on Cobra …DON”T.  Overall, the cost factor doesn’t cut it or you need to absolutely clear what the cover. In our case, I just assumed everything was covered.

So then yesterday, I had to drive back down to Mercy cancer center for my appointment.  It’s kinda what I thought he would say is yes, it’s going up but too soon to start treatment and to keep thinking of this as smoldering myeloma.  So it’s watch and wait. That’s okay and when the time comes and my numbers are going up faster, I’m sure we will move ahead.

Today, I’m going to do some cooking. I’ve made hardboiled eggs and I’m going to make the olive and feta topping again. Plus I ‘going to grill some chicken for lunches and dinner. I think I’ll grill some onions while I’m at it.

I have some house chores to catch up on and then I’m going to hit the gym.

 

Friday Stuff

Happy Valentine’s Day!

We don’t do much special since I hate crowds and would not even consider a dinner out on VD day. I did buy some nice carnations at Safeway and some roses at Costco so they are on the table looking pretty.

D126A6A1-573C-4FEE-8D37-0AAA6677D393.jpeg

It’s been a maddening week trying to get a camping reservation. Every single morning ( including today) I have been on the computer at 7am on the dot( watching the second hand) to reserve a spot and absolutely NO LUCK!

There are so many people trying to get reservations for August that it’s almost impossible. Today, I’m trying for 5 different spots and not sure if that will slow down the computer. But if I don’t do the 5 then there’s no chance. I’ll update after 7am.

NOPE>>>>>NADA>>>>>ZILCH

Let’s see what else. Barclay had to go back down to UCD med center to pick up an immunosuppressant drug because he’s had skin itching and slight rash.  That’s the one he’s been off of since December so they don’t want any GVSH happening.  We’re also dealing with medical bills from August that the Cobra was supposed to cover and they don’t have it straight. I’m ready to just chuck it and make payments. We’ve been trying to get this squared away for months and they just aren’t getting it.   They keep saying he had 2 insurances but he didn’t an only had the Cobra. What a PITA>!

I’ve applied to the LLS for my grant for 2020 and that will pay my AARP supplemental insurance.  They do such an amazing job and I’m grateful for the grant. If I ever have to go back on Revlimid they would help with that co-pay as Revlimid is a tier 5 drug and runs about $20,000 a month. With insurance you need to go thru the donut hole and then still it runs about $1500 a month.  I can’t see me going back on Revlimid but who knows.

Speaking of which, my labs came back very disappointing. They almost double!! ( well the Kappa light chains did) so that is a very bad thing.  I see my doctor next week so I’ll see how he sees this change. My ratio went up too but still is overall low at 6.58 mg/L. It’s the ratio that is more important. Still, it freaks me out that myeloma cancer cells are activating and multiplying. WTF….  well, I knew it would happen sooner or later as Multiple Myeloma is incurable but can be held in check.

Today I’m just planning on staying home and doing somethings around the house. I need to mop the kitchen floor and wipe the bathroom.

Tonight I think I’ll make a pizza Margherita although I ‘d need to run to the market for some fresh basil.

Facing a New Future

Another post where I start writing it before I have all of the facts. I actually felt physically sick from my appointment yesterday. More worried than I’ve probably felt since I was first diagnosed back in 2009. I want to be honest but I’m actually quite scared about what honest might look like.

Yesterday, my consultant told me 2 things that weren’t great. He told me the lesser of the two things first: My stem cells – not enough were harvested back in 2011. Not a huge deal. It means I have to go through a stem cell harvest again (which I hadn’t wanted due to being really ill first time), but the process is easier at the QE with them not making you have chemo – just the G-CSF injections (these stimulate your body into making more stem cells).

So whilst this wasn’t the news I’d wanted after months of waiting to hear, it also didn’t feel like the end of the world. I could still harvest in March / April and have my transplant in April/May. This was scenario one.

However the second thing was: My Paraprotein levels look like they’ve plateaued. Now this could be ok if they decide they have only plateaued and aren’t rising. But his fear is that actually, they’d like them to be lower than what they are (9.4), and that if this is the case, they would like me to have some extra chemotherapy to really blast them before a transplant. This wouldn’t just be chemotherapy like I’ve been on for the last six months where a lot of life has been able to continue. This would be me on a cocktail of high dose drugs (called DT-Pace) that I would be given 24/7 for 4 days, and where it could take up to 28 days to recover (in hospital). This would probably be repeated at least twice in the hope that my paraprotein would decrease. Then I’d still have to go back for the Stem Cell Transplant after this where I would definitely be in hospital for 3 weeks. This DT-Pace would result in an earlier hair loss and being pretty poorly. And would really disrupt everything for the kids, and for Nick for an extra 4 months or so.

But what I’m really scared about is that it would mean that I’d be on my third line of treatment. With myeloma, every time you go down a different treatment route, you are getting closer to running out of options. First and second aren’t the end of the world. Third probably isn’t either. But if my myeloma has mutated that much, it might not respond to third line treatment either. And is less likely to give me as deep a response.

I have spent the last 8 years becoming a ‘glass half full’ person. I’ve tried so hard not to let myeloma dictate who I am, what I do, or allow it to negatively consume me. I think I’ve succeeded. But this is all very scary and I am back to that feeling of helplessness and a fear of what might happen in the future. I am so scared I won’t see the kids leave school, or graduate. Will we get to finish the house that Nick and I have been lovingly trying to renovate? Will I reach my 50th – something I took for granted even when I knew I was relapsing. I never thought I might not actually reach it.

I know this might be a tough post to read. Believe me, if it’s tough for you, it’s even tougher for me to live it. And for Nick.

So bear with us at the moment. We’re trying to work out our priorities. We’re trying to make the right decisions – for the four of us first and foremost. But then for everyone around us. And we don’t want to give up – there’s a long way to go.

Stuff

What a week!

The colonoscopy went fine although there were polyps so I will need to do another in 3 years? 5? not sure, as I haven’t gotten a message from the doctor yet. Oh well, the best-laid plans of mice and men:(

Now I’m feeling under the weather. I think my body just saying enough already and to rest. On top of the 2 days of jury duty last Thursday and Friday, then the colonoscopy prep on Monday and then out the door Tuesday at 6:30 am, all a bit much for me.  So today I’m just going to take it easy and drink lots of lemon water.

I am going to make marmalade although no one locally has Seville oranges. I’d probably need to go to Whole Foods down the hill and I’m not doing that.

The budget is set for February and I did take cash for groceries for the week.   I’m going to budget $125 a week. I went to Target yesterday and bought slice cheese and a few other things but other than that haven’t spent any extra money.

We were thinking of going to the coast but now it looks like it’s going to be a little too cool so probably not. Cool is around 50degrees.556B21DA-3A6C-409A-855E-C00C782CA2F6.jpeg

This was one of my Christmas presents as I’ve always wanted a French candle. Clearly not frugal but lovely. Would I get another, No! It had a lovely fragrance but the cost didn’t really justify that. Well, now it’s a pen holder. I also have always wanted a Jo Malone orange blossom candle. it’s in the same price range so probably not.

I have an appointment for my labs tomorrow. Oh, joy another test. Probably not good news so, WTF, right?

Cycle 2 Week 9: Cancer is doing weird things to my body

In mid-Dec I was having headaches that wouldn’t go away so I went to my hospital’s Urgent Care for an assessment. A CT Scan didn’t reveal lesions or tumours. While waiting to see an ENT (Ear Nose Throat) Resident, I had a period of uncontrollable chills and shaking, that I attributed to my body being cold. The ENT Resident examined my nasal passage and found I have chronic sinusitis due to my cancer, so he prescribed a nasal spray to repair it. He also said that the random lumps in my mouth were benign.

Later that week when I arrived for chemo treatment I was coughing and had a fever of 39.1C, so I was isolated and various tests were taken. Chemo treatment was stopped for two weeks and I was placed on antibiotics. Results from the CDC revealed that the uncontrollable chills, headaches, and fever were a precursor for the Adenovirus, a virus that attacks people with immune suppressed systems. One of my pre-chemo drugs is actually an immune suppressor. Thankfully after a couple of weeks I had fully recovered from the Adenovirus and my chemo treatment continued.

My Dec blood test results were pretty meaningless (jumped to between 47 and 48 from between 40 and 42 in Nov) as it was based only on my first chemo treatment which was Cycle 1 Week 1. Cycle 1 Week 2 and Cycle 1 Week 3 were cancelled due to the Adenovirus. I remain confident that January’s blood test results (based on usual 4) will show a drop in my cancer levels.

Overall, I’m really focused on listening to my body, eating healthy, and relaxing as much as possible to help my chemo be as effective as possible. Bed has been my friend recently.

My mobility is compromised due to the lesions in my pelvis, so walking up stairs is no longer possible, without significant difficulty.

I really don’t stress about the various things going on with my body. I have an incurable cancer and I’m alive, so I’m thankful for that.

I take each day as it comes and focus on being calm and happy.

Cycle 2 Week 9: Cancer is doing weird things to my bodySelf-portrait: Rest is key for my health

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 - Canada GeeseMay 2014: Steveston – Canada Geese

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