Simple Sunday

It’s been a nice week with really glorious weather. We’ve eaten dinner out on the patio and it’s been great. The mosquitos are coming out though so that’s a pain. Just when it’s getting nice enough to sit out after dinner, wham, mosquitos buzzing. I guess I ‘ll try and find the bug spray today.

The chickies are growing and going outside in a new cage on the grass but still coming into the dog crate at night. They have t least another month of going back and forth and then they will still need to be separated from the big girls for a while. Getting chickens is actually a lot of work. But by September we will start getting some eggs so that’s nice.

This week I have my doctor’s appt and I will be doing a video appt. I’m not sure how they set it up yet but should know tomorrow( Monday).

I went down to our Holiday market the other day when they opened( 7 am). Spent a small fortune but got some extra things for the prepper pantry. Ever since we moved to this area in 1975, I have been a bulk buyer. Beans, rice, honey, oats, etc. We had a small co-op in Auburn at that time and we could order stuff. We also did a buying club with what is now UNFI( That Barclay just retired from after 25 years). It was Mountain Peoples Warehouse then and you could order bulk things even dairy like cheese. Then a group would get together and separate out orders.  I don’t think they allow buying clubs anymore but I could be wrong. Anyway, that’s what we did. Somewhere after embracing a minimalist house, I started backing off on having a prepper pantry. I still would buy Lundberg brown rice and a case of tomatoes from Costco but I had been trying to back off it. Then all this Shit hits with Covid-19 and yes, I am back in buying bulk in full swing.

A prepper pantry though just isn’t bulk rice but enough food that could last you anywhere from 3 – 12 months. Now I don’t want a bunker with guns and food but I do want to build up my pantry.

Some stuff I’m putting out in the barn on the restaurant shelves( stainless steel). Extra dish soap, laundry soap, canned goods are going out there. Some packaged goods are going in bins to store. I’m planning on buying a food preserver thing that seals the contents of the bag but I want to wait and see what Costco’s looks like before I commit to it.

So far my plan is to have a dozen boxes of Pasta, a case of kidney beans, a case of cannellini beans, a case of refried beans, a case of tomatoes, and other smaller quantities of condiments, sauces. Mostly stuff I know would eat normally. I did buy 8 freeze-dried meals but I’m not sure about doing that again as that is not something we would normally eat.  I’ve been meaning to try one just to see how it is. Also a couple of boxes of tea and sugar. I keep some extra coffee in the freezer but in a shut down that would last long. Maybe I’ll check into instant or freeze-dried coffee as a backup.

Right now the freezer is being eaten down and I haven’t bought a lot to replace things till I get to Costco which I’m thinking will be mid-May.

Dinners have been uninspired like spaghetti and sauce, meatloaf( I bought as I don’t know how to make a good one), rice and beans, grilled chicken, salad, and just normal stuff.  Tonight I am grilling chicken outside and will make a potato salad I think. I made a nut loaf with brown rice yesterday so I will serve that to B.

Well, life goes on, or as the chaos theorist in Jurassic Park says” Life finds a way”.

Flylady has two zones this week. Living room zone and entryway zone. I did the living room already but still need to vacuum.

 

Car drama:(

I wonder why things happen all at once sometimes. Is it the stars aligning or just WTF?

 

My daughter has a nice CRV Honda 2007.  When she drove in the other evening I thought I heard something from her engine. Then the next morning when she started it I said Whoaaaa….you can’t drive that.

So she took the Santa FE.  B and I drove into the Honda dealer and the news was grim.

Back a month ago when she took it to see what was up with the A/C, they said the whole system was shot. $5000 to fix. So she said no thank you. The guy said she could still drive the car no problem.

Well, Big problem as the pulley and belt are ready to come off and that would ruin the engine. So we were at a stand still because she still owes $5000.  So now this fix was what???

So when I went in this morning, he explained that the pulley and the air compressor ( not a Honda part) will be @ 1000. And then they would disconnect the electrical to the A/C.  I’m actually not sure why they didn’t do that before. Hummmm , maybe a mistake on their part. Anyway…..

We thought to bring it to another garage and have them do the whole AC for $3000, but now that he’s offered this, I think that’s the best way to go so I said go ahead.

At least this way she can still use the car , pay it off, and then next year trade in for something newer.   GEEez what an ordeal and so stressful.

I went to Grocery Outlet for some vitamins and a few items and now home. I think I can finally relax.

Well, she will still have to figure out driving Tuesday as B needs his car to go to San Francisco for work.

Yikes, what we do for our ADULT children…..

 

 

 

Midweek…..

Monday ended up very traumatic but at least it ended on an up note. Ollie our 15-year-old cat has thyroid cancer and a large tumor. He is my daughters first love. 🙂

So Monday morning he had a breathing attack and we thought he was a goner. He wasn’t able to really breathe in as he had saliva in his throat.  It looked like he was going to kitty heaven. We called the mobile vet and said it was an emergency and we needed him euthanized.  She arrived in about 30 minutes. Ollie was breathing better and up an moving a little bit.  We then were unsure what to do. He seemed ok. Should we still put him down?? We just couldn’t decide. In the meanwhile the dogs needed their heartworm tests, so she did that. By that point, Ollie came outside although he was still wobbly.  so in the end, we decided NOT to do it.

I’m glad as it seems he’s back to eating and so forth. We know it’s going to happen at some point again but for now, it just wasn’t the right moment.

It was very traumatic though and we were crying. But for now, it’s good.

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This is Ollie and Rocky( the rescue Border Collie)!!!

Ollie came from the rescue place too. He was maybe 8 weeks old and a snotty little thing. He grew up to be almost 20 pounds. He’s part Maine coon. Now he’s pretty skinny but he’s still a love boy!!

Over the years, we have had many pets and have had to put down many pets. I have learned about love, healing, death, the circle of life and much more from our pets and I’m grateful to them for that.

I’m not sure I want any more pets at this point. But they do bring joy. I’m just not sure I want the heartache when they’re gone. I’ve been thru it so many times.  I still miss Tucker, Blackie, Princess, Jason, Papillion( my first true love), Coyote( who in fact was part coyote and we found in New Mexico out in the desert abandoned), and so many more.

So Tuesday was a better day and we went to the gym. B is off to Eureka for the week. I wanted to go but someone needs to be on pet sitting so I guess that’s me. That’s okay. Last night we had a yummy zoodle dinner with one of the yellow zucchini from the garden.

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Then I topped it with some organic beef sauce basil from the garden. Pretty yummy. I’m enjoying the zoodles.

Today is another hot one so I’m heading into Auburn to drop off a thrift store load and then back home. Not sure what I’m doing for dinner. Something easy.

 

Darzalex as a single agent

I haven’t posted any updates lately. The reason is, after having had MM for so long, I just don’t think about it very much.  It’s not like it was in the beginning.  I used to wake up every day, and that was the first thing I’d think about. That was 2003.  It’s just a part […]

The Fear – Part II

You have stopped responding fast enough to traditional Myeloma treatments’.

Fuck. 

Few things warrant the use of such foul language, especially in the written form, but a ‘fuck’ or a ‘bugger’ is definitely suitable in the situation I found myself in last Thursday afternoon. I didn’t say it out loud; I was still able to maintain some level of decorum.

I think I know what that statement means. It’s not the worse news I could have received, but it is not far from it. It wasn’t what I was expecting. It is a polite way of saying that my treatment isn’t working. Not working. Stupidlyhow could I have thought my treatment was working when I was in so much pain? In fact, after my first full cycle on the recently licensed drug I was on, I told a Medically Trained Person that I did not think it was working. I wish, with every weakened bone in my body that I was wrong. I wasn’t. 

 Am I dying? 

I don’t think I thought all of this or processed it when I was in the Medically Trained Person’s office.  I was in shock and I was trying to hold myself together. I didn’t hold myself together. I couldn’t speak, not initially anyway.  The first words I uttered, did not sound like fully formed words. It was an explosion of emotion. I tried to say that I wanted my hip fixed but that became a sob about how overwhelmed I was with the news. That’s right people, in this circumstance, I simply chose to yelp ‘I am so overwhelmed!’. Then I sobbed. It was not a cry, it was a snot-producing, face-pulling sob that was softened when I saw the tears in the eyes of the Medically Trained Person.  

I haven’t had long enough.

Thank goodness for my Big Sister. I had no doubt that she would step up in this kind of  situation and step up she did. I think I had become deaf to what was happening around me. To me, everything that happened in that room was a blur, but she wrapped me up in metaphorical love and got on with what needed to be discussed. It could not have been easy for her. It is one thing to be afraid of something, but facing that fear head, whilst holding somebody else up, on is on another plain entirely. I know that it was not just my fear either. What is happening to me, what was said in that room, is a fear held by everyone I know (and happens to like me). I will readily admit that I lost control. For the rest of that afternoon I repeatedly tried to compose myself, but failed miserably. I didn’t know that tears could flow so uncontrollably. Nor did I know that I was capable of talking such complete and utter drivel. But, for the rest of that afternoon and evening, I had my sister sitting next to me, looking after me and discovering the many benefits of a banana milkshake.

Am I a failure?

Anyway, let’s move on from this emotional mumbo jumbo; we have some real business to get to. In a nutshell, despite three stem cell transplants and many, many rounds of treatment by disease is currently active and my paraprotein is on a rampage. It is so active that I have to have radiotherapy on the distruction it has created in my body. Whilst the drugs I have been taking including the one I changed to in January are doing something, the cruel circumstance is that they have not been doing enough. This leaves the question I asked just a few months ago, what else is there?

Is this the end of the line? It now seems an almost rhetorical question. 

I do not wish to bore you with the history of Myeloma treatments, largely because I’ll reveal how little I have chosen to know about it. I’ve been deceiving, most of you will know far more than I do on the subject. For where we are in my story, all you need to know is that new myeloma drugs tend to be derivatives of older drugs. They are related.  This means, in a shake-your-head, we’re-out-of-ideas sort of way, the Medically Trained People do not think that such medications will work on me for much longer. It’s hard to process that, I almost have to sound it out in slow motion. And then repeat it. And repeat it again.

There are too many things to say about all of this and I don’t have the distance or the benefit of an adequate pain and drug feee sleep to eloquently describe how I feel. I know I am angry. Since I was diagnosed, I did everything I was asked to do. Almost anyway, I haven’t lived in a complete sin free bubble, but I have lived and I have done what I have been told to do. I took my various treatments, I coped with the disappointment after disappointment and still, I get out of bed almost every day and take the pills I have been prescribed. Yet it has still gone wrong. I used to joke that given my age and the flocks of people trying to help me, that I was a medical marvel. I willed myself to be, terrified that I wasn’t. It now transpires that the only thing marvellous about my treatment history is in how powerful my Myeloma has been. Perhaps I should have gone gluten free as one nosy Parker once offered as superior soundbite.

I do not believe in any kind of divinity. I have nobody to prey to and nobody to blame. A stranger once told me that my lack of faith was the reason I had cancer, but let’s face it, there are a lot of knobs in this world.  When I add it all together, I just think something bloody awful has happened to me and no matter how much I have fought it and continue to fight it, it’s stronger than I am. Long gone is my bereavement for my lost children, old age and picket fence. My fears now seem so much more urgent.

I don’t know why this happened to me, but for the last week, I have felt ashamed. I know that I did not bring this on to myself, even if I do love white bread too much. I do not believe that somebody’s willed for this to happen to me. And yet, I feel like I should have told my body to do more. Fight harder. Forget about being polite and smiling at everyone, I should have been a total bitch, constantly in attack mode like the scary army captain I met once in the cancer centre who made me cry when she announced it was her sheer willpower that caused her continued remission. I have willpower. I have multiple reasons to live, and yet I currently live in a world where I cannot do up my shoes.  

I should have reacted better to my medication and treatment plans. All those odds, all those odds and I was always on the wrong side. I’m angry that all of this is making me think about what this world will look like without me in it. I didn’t realise I have so much to lose. I watched my mum run around after me at the weekend, making me food and making sure my neck was adequately supported by my pillows, I listened as my nieces nervously tried to make me laugh as I tried to rewind my tears, as their Mum tried to keep us strong, and with every vibration, I could feel my friends trying to cheer me up or express their anger. I feel like I have let all of them  down. 

I made so many half promises about my treatment. This one will work. We will go on that trip. I can make it to that pub. Seeing the waves of broken promises scatter around me is my new definition of fear.

But what the hell is all of this? I cannot stop yet. I must not stop yet.

The Medically Trained People aren’t quite ready to stop and nor should I be. Last Thursday, when Big Sister’s concentration powers really kicked in, I was told of a clinical drug trial at St Bart’s involving antibodies. I could give you the medical blurb, but I think I should save that for a rainy day. All you need to know is that it is completely separate to all other treatments I have had. It might work, it might not, but the space on the trial could be mine. It took a few days, but I can now firmly say that I take back everything negative I have said against that hospital. 

A lifeline. 

It may sound foolish, given my very limited options, but the thought of leaving the comfort of UCLH once more added to my devastation. That hospital, in both my successes and failures have held me up. I have not other point to make on this subject, but it’s important. Ever the pragmatist however,  as I said last week, I think I said it anyway, if it is not clear to you yet my memory is a haze; ‘it is what it is’. I have to get on with it. 

On top of all that has come before this,  we had to discuss my need for radiotherapy. The practicalities. You can imagine how long this one clinic appointment felt. So much to take it in, so much to fathom. Ahead of last week, when I was suffering from worry filled sleepless nights, I thought the good and bad news hinged on the what was found in my MRI.  Clearly they did not, and now it seems easy to forget that I need some fairly urgent treatment. I have something in my neck that shouldn’t be there for crying out loud. And yet, the radiotherapy feels like it has become secondary to the ‘big news’ despite how quickly I have once again found myself increasingly immobile. 

I do not know if it is in the form of lesions or tumours or the generic term of bone disease, but I require treatment in my neck and my hip. The area in my neck has caused the majority of my recent problems in my upper back and my arms. Again, this may sound minor, but wondering why and how I have lost the sensation in half my hand for the last month, is a blood-curling. To even consider how the knee bone really is connected to the leg bone is mind blowing. If anybody has seen me move in the last month, you would have witnessed how much this pain has made me squirm. The pain and this is something that has not happened in a long time has been at a cry inducing level. I have cried not because I feel sorry for myself, I mean I have done that too, but because the physical discomfort has been so great.

It’s a juggling act though. As I am now due to start a new treatment at a different hospital, my doctor was reluctant to also zap (a term I have used a lot over the last week when discussing my radiotherapy, mostly because I can use an emoji) my pelvis. It may lower my blood counts and it will make me feel groggy, but even in the whatever state I was in last Thursday, I knew I needed my hip fixing. To get through my next, I have to be as fit as I can be.

I think it goes without saying, but the last week has been a whirlwind. It doesn’t feel like a week. In whatever timeframe I am now working in, and I guess it is a new timeframe now, I feel like my world has been turned upside down. I have so many things coming from so many directions, that I laugh at the meagre everyday complaints I have been able to read on social media. I used to think I was a great multi-tasker, but when it comes to affairs of my life, and the time that is left in that life; I do not have the foggiest.

I have to give myself a few passes. Firstly, I have been put on a ‘pulse’ of steroids, that is controlling my pain and will hopefully hold the myeloma whilst the Medically Trained People are doing their juggling. It is a ten day course of as much steroids. That’s right, ten days, decreasing by half every other day. It’s a well known fact that I cannot take a lot of steroids, but to put it into perspective, the first day’s dose was more steroids than I usually take during a full cycle on my old treatment and each weekly dose of that put me in bed two or three days. I am awaiting the inevitable crash increasing alarm and dread.

Secondly, I am currently on a lot of pain medication including sedatives. I basically rattle. 

Thirdly, I am once again struggling to look after myself more than I usually struggle to look after myself. I cannot bare weight in my left arm, my right arm is starting to go the same way and every activity, whether it is washing, eating or cooking seems impossible. In this mindset and the physical prison, I have to arrange my forthcoming radiotherapy sessions and attend the necessary testing for the clinical trial. And don’t think for one second, I have done any of that without my lipstick on. On Monday, which again is a story for another day, Mamma Jones and I spent 12 hours in London waiting, meeting new people and satisfying my steroid induced hunger. Today, I have seen a doctor, looked at some scan results, been measured and had two radiotherapy tattoos. 

Lastly, I just ask you to add everything up, consider everything I have said in this here blog and attempt to fathom where on earth I can begin. I have to begin somewhere after all. Welcome, to another volume in my possibly soon to be ended story of my life. 

To clear my head, Mamma Jones took me on an epic adventure to a National Trust property last Friday. I thought you might appreciate the evidence that I am still here. Getting out of bed.

So, there it is my current story. It’s not cohesive, it’s all over the place because I am all over the place. It’s new. It’s daunting. And my goodness, it is fucking scary. 

EJB x

P.S. Kudos, and I mean bucket loads of the stuff must go to my Medically Trained People and the NHS in general. In just seven days, they have seen me transferred to St Bart’s for (hopefully) the start of a clinical trial. UCLH somehow got my name into the mix of said clinical trial and St Bart’s seem to be moving whatever needs to be moved to accommodate me (no jinx yet though). They have also liasied with the radiotherapy department, resulting in an appointment today which included all my pre treatment measurements, ensuring that all areas requiring treatment are attended to. The treatment for which is starting tomorrow and will conclude next Thursday.  I have no more words in me to describe my gratitude.

2 Days left of JKWP, lesson: everyone has a story!

Life is about learning and living. Each day is new. The past is gone ,tomorrow, who knows. But we have today.

In the same way of thinking, each of us has a story. Some are happy, some sad, some traumatic some rich, some poor. You get the idea. the point is we all have a story. It is what makes who we are in this moment. Its not for us to judge that story. We can’t be inside someones mind to know what their story is. So, when you meet someone grumpy or depressed or even happy, remember we all have a story.

At this point in my life I am not religious(been there, done that), or even that philosophical (been there, done that), But I try and practice kindness and be aware of just being nice to those I meet. Sometimes it works, other times I fall short. Its all about the journey.

Sunny Fall Day

This is my cat, Peeps, taking a snooze on the back porch on a sunny October day. Peeps has been with me for a few years now.  She showed up at my house one winter.  I called her Peeps because she used to stand up at the door and peep into the house through the …

30

I am thirty years old. I have just turned thirty years old. It is no coincidence. Today, the 24 May, happens to be my birthday.

Great Stuff. Super. Cool..

I would prefer if it were not my birthday today. I would have said the same thing last year, but I will say it again, I no longer feel like celebrating my birth. Sure I like the cards, attention and presents but I have cancer to fill that void.* My birthday to me, represents not that I am getting older but that I am getting closer to my death. You might say that this is the same for everybody, for that is what ageing is. I think, the difference is that myeloma odds tell me, I have had more birthdays than I am still to experience and that is not something my peers can say. I do not feel like celebrating that.

. Don’t believe the stats, don’t believe the stats. Hypothetically, if I were to allow myself a brief period to fully embrace the stats, the birthday would be the time to do so. Along that line then, I have eight birthdays left. Eight whole birthdays. Add in a milestone birthday into this mix of negative thinking and what do you get?

I have experienced over three quarters of my life and I have a mere quarter of it left.

This of course, then begs the question about whether I wasted my first 30 years. I am sure it is normal to go through some sort of reflection, even if it is only to consider the cause of non-existent wrinkles when one turns 30. I have tried to go through the usual, getting older type of reflection, but the problem with reflection is that it leads to planning or some sort of hope, and I cannot do that long term.

I cannot buy a house, have a family, maintain a garden if I had a house and I am perpetually single. There are so many aspects of my life that on the face of it, makes me look like I have not grown up at all. Some of these things are not caused by My Myeloma, but they are not helped by it. Going forward, they will prove much harder or even impossible to get and that is because of myeloma. When I reflect, like I am today because I am forced into it by the date, I would say that I should have got myself these things when I was ‘healthy’. It is all one big cycle that I do not need to bore you with. Needless to say, it does not make me feel good about myself. It usually ends with me being jobless, single and living with my mother supported by the State, before I die prematurely because that is what myeloma does. It kills people as well as ruining their birthdays.

I have received many nice cards and in some, the sender has asked whether I can believe I am thirty in the way I put it in theirs. The answer to the question is a yes, I do believe I am 30 but I do not believe I will make it to 45.

And that is the 24 May.

Anticipating these fine thoughts, I decided the best thing to do was to invite myself to Berlin today. I can almost trick myself into thinking that that is what my day is about.

Happy Trip to Berlin Day. I’m going to the airport!

EJB x

* I think I need to be absolutely clear on this point. I may not enjoy the act of my birthday nor the reminder that it hammers to my forehead about my life being different now, but, the attention and messages one receives on their birthday are welcome.

It’s complicated and I am needy.