the week ahead…

Another quiet week with no appts. I don’t get my labs till the first week of August. I’m expecting the worst with another steep rise but am still hoping to delay treatment till fall or even this winter. Not to be pessimistic but realistic since Myeloma just doesn’t go away and blood work doesn’t magically get better:(

Monday is chore day and doing little things around the house. I cleaned the tub with Comet and I plan on washing the towels which I try to do on Mondays. The Flylady zone is the bedroom. I’d say if you’re new to Flylady, clean everything out of your bedroom except your bed and maybe a dresser. No TV’s, no extra chairs( unless it’s a very large room), and basically remove all distractions.  If you haven’t uncluttered, now is the time to do so. As I’ve said many times, once things are simplified and cleared out cleaning is a snap, and keeping it that way is quite easy. More stuff means more cleaning and it is visually distracting. I do have a Heywood Wakefield bedside table I need for my meds that I take in the evening and my water.  If I could figure out a way to eliminate that I would.  Maybe another wood crate attached to the wall like the one on B’s side of the bed. It’s small but has enough room.

Mondays are also the day we don’t walk but oddly it feels like the day just doesn’t feel quite complete. But since I’m quite OC about it, it’s probably good I break up the routine.

I’ve been researching long term prepper pantry storage and it seems Mylar bags are the way to go. But since I’m using the vacuum sealer right now, I don’t think I’ll add mylar to the mix. Maybe down the road.  But I’m not looking to try and prep for 5 years and those people that do are kinda extreme. So what I am going to do is get a few more 5-gallon buckets and put some of the vacuumed sealed bags in them so light doesn’t affect them. I’ll try and do a bucket for rice, then one for beans, and then one for flour or baking things. Also, I’d get the gamma lids since they screw down.

I do think that in the fall things are going to get worse and so it is good to be ahead of that. I still like the idea of the upright freezer for certain things but we need to kinda regroup from the tree expense.

Meal plan for the week is : ( in no particular order of using)

  • Tacos, bean and some taco beef for the carnivores plus all the trimmings
  • Cobb salad with hardboiled eggs, sliced cheese, olives, maybe some kind of bean like kidney beans, veggie bacon, cherry tomatoes from the garden and we also have cucumbers coming in as well.
  • homemade macaroni and cheese with broccoli on the side
  •  chicken piccata/tofu with corn I froze( from the fruit stand) and maybe potatoes.
  • homemade pizza
  • mystery meal???

Well, that’s a wrap for now.

 

 

 

 

Simple Sunday and a blogger apology!

First off, I owe an apology to Hawaii planner blogger.  She is an honest blogger who I respect. I was unfair in my comment concerning her kitchen renovation.

I was rude and unnecessarily judgemental about frugalness while being well off.  That was an unfair assessment on my part.   Everyone should try to be careful with their money no matter what their circumstances.  We can all learn from one another and should be open-minded about other people’s circumstances.

 

 

Overall, we had a nice week.

Quite hot and it will continue to be so for a while. At least it cools off at night so the coolers are turned off by 8pm. I’m expecting our PGE bill to be high.

I went to Safeway as I mentioned and it wasn’t too busy at all. Some people were still not wearing masks but most were.  I’ll probably not go back to Safeway but if I need something over to Bel Air as they are requiring face covers.  I didn’t really get any prepper stuff just regular groceries.  I don’t need anything this week but 1/2 for coffee which we go thru a lot of with 4 of us drinking coffee with cream.

We’ve been watching some fun old movies like Caddyshack.  Another favorite this time of year is What about Bob!!!

 

Friday Stuff

There’s not much going on over here at Casa Neumann’s.  Same ol’ same ol’.

This morning I’m going into Safeway to get a few items that are needed but other than that just the regular stuff. Most of my house chores are done for the week except a tidy up here and there.

I have pizza dough made ( on Wednesday) so I just need to bring it out of the fridge and let rise at room temperature.

I was looking at upright freezers for the ol’ prepper pantry but geez everything is sold out.  If I order a small one 14 ft it says delivery is in October, so maybe?? Do any of you use both a small chest freezer( that’s what I have now) and an upright?? What do you stock up on. I know I could put my extra flour and rice in there and that would extend shelf life. Plus milk freezes well and cheese. Let me know what you do. Other people’s setups are helpful to know.

 

OMG, we had a bear go thru the yard last night.  Arlo recorded it around 3:30 am. We have a mountain lion that’s been hanging around but we’ve never seen a bear. They are here because people have lost their chickens to bears but we’ve never seen one. Very Wild things going on.

 

The Stem Cell Harvest v2 – Day 2 (post plerixafor)

So after Wednesday’s disappointment, I went back that evening to receive plerixafor, a £5000 injection that helps move the stem cells from the bone marrow back to the blood for harvest (so so grateful that we have the NHS in this country – worth every penny of tax that Nick and I have ever paid!).

As I mentioned, I’d been warned about sickness and diarrhoea, but luckily only felt a little queasy and poorly. Unfortunately it also causes insomnia like the G-CSF injections and that seemed to be the one downside. Another night of no sleep (not helped by a fox deciding to get randy for an hour at 2am!) meant a tough start to the day.

That said, the day itself went fairly well. I’d been so nervous after the harvest I had back in 2011 when they’d had to go in my groin (and hit a nerve in the process!), that I have nothing but the utmost praise for the staff at the QE in Birmingham.

They put me straight onto the machine when I arrived at 8am and had managed to find veins with limited issues. We did start to have the same problems as in 2011 but they were great at slowing down the machine so that it wasn’t an issue.

As you can see from the photos, basically what happens is that they put a canular into one arm, and a large needle into the other and turn the machine on!!! The process isn’t at all painful which is good but it did cause what feels like a vibration through your whole body, and tingling and numbness in my hands and feet. This was due to my calcium levels dropping (all part of the process) and they just keep giving you tablets to help. (Luckily, it wasn’t as bad as 2011 when I’d ended up on a calcium drip and shaking.) I think the only other issue was when the big needle came out of my arm – you’re meant to keep your arm in one position for the whole 8 hours and without even realising it, I moved it at one stage so there was a slight panic trying to reset everything in opposite arms! But thankfully, the amazing team got it all started and the machine back working.

Throughout this, they’d done the same CD34 test at the day before to try to make sure that the plerixafor had worked and whether they were likely to get the stem cells. Around 1pm, they got the results which said that I’d only doubled my count and not quadrupled like we needed, so there was a bit of a concern about how many stem cells they’d actually get out.

Thankfully, the calculation the actual machine said was right and we managed nearly 1.5 million – I only needed 0.5 million to add to those that had been harvested back in 2011. So come 6pm last night, Nick finally got me home where I managed to get a much better nights sleep. That will be the last stem cell harvest I ever have to do as you’re only ever given 2 autologus transplants.

So now it’s another waiting game. I go in next week for lung and heart tests, and assuming that all is good there then I have to wait for the QE to start doing transplants again. We get the feeling that this won’t be before mid-August, but other than that don’t know when. The hope is that it will be before the winter when there is of course more risk from illnesses, a second wave of covid, etc.

I’d like to say thank you to everyone for all your lovely messages of love and support. I can’t begin to say how much it means at a time like this. It was 11 years ago today that I first got diagnosed with multiple myeloma, and never once have I felt alone with it. From Nick’s unwavering love and kindness through to all of our family and friends. I am so lucky to have you all around me. Thank you

Blood tests

I haven’t had my regular blood tests (plus Bence Jones) in several months for a variety of reasons, mainly the Covid-19 lockdown, then the slow reopening here in Italy.

On Monday, I finally decided to make an appointment at the lab where I always have my tests done. I went there yesterday morning.

I got there early and had to wait for about 15 minutes. Things have really changed, compared to the pre-Covid era, I mean: a nurse greets all patients outside the lab building and makes the early birds like me wait outside. Much better…I feel safer outside, anyway.

So here’s the new procedure: you wait outside until the time comes for your appointment or until your last name gets called. At that point, you have to rub your hands with disinfectant from an automatic dispenser (I used my own hand sanitizer, though) and then have your temperature taken with a non-contact forehead thermometer.

Inside, in the waiting room, you can’t just sit anywhere, the way it was before. Social distancing is the rule now. Before, there were about 35-40 seats. Now there are 5 or 6; the others are taped off.

Oh, and, of course!, goes without saying, you have to wear a mask at all times, even while you are waiting outside. In Italy, pretty much everyone understands that it has nothing to do with politics (duh), and that it’s just PLAIN STUPID and POTENTIALLY VERY DANGEROUS not to wear a mask.

Besides, in any case, it’s still the rule.

Case closed.

Yesterday morning I was actually wearing two masks–a surgical mask underneath a cloth mask. That is my new norm: whenever I leave the house, go into stores or any type of enclosed public space, I wear two masks, even though the rule is one mask (at least). Stefano wears two masks, too.

Can’t be too safe. I am well aware that I have a weak immune system…no idea what Covid would do to me, and I really don’t want to find out. Neither does Stefano.

Anyway, compared to other countries that have reopened way too soon, Italy, now in Phase Two ( = living alongside the virus), is doing quite well. Covid-19 hasn’t disappeared, but the infection and death rates are way way down. I just hope that people returning from abroad, and tourists of course!, won’t begin spreading Covid-19 here again.

That’s my main worry: Italy was THE first European country to shut down and one of the first to reopen. We don’t want to go through another lockdown. Really don’t. That said, I am comforted by the fact that all the people I have seen out and about here in Florence are wearing masks.

And, you know, life can still be enjoyed, in spite of these restrictions…Perhaps I should have written, “thanks to” these restrictions. We know that wearing a mask, washing our hands frequently, keeping our social distance, and following the rules set by the medical and scientific communities, can keep us safe. I simply would not be able to enjoy being in a non-safe environment right now…with maskless people, for example.

Anyway, to give you a quick example of how life can be enjoyed, Stefano and I have EATEN OUT three times in the past few weeks. Yes, we have eaten out…with friends…in RESTAURANTS. Very exciting, after so many months of being cooped up inside our homes.

I admit, the first time was a bit scary, but we have always chosen places with outside tables…Every member of the staff (from cooks to servers) has to wear a mask, the tables are NOT close together, and so on. It was so nice to eat out in a safe way…

So, it can be done…!

The Stem Cell Harvest v2

8am: So five days ago I started prepping for my stem cell harvest which is taking place today. It involved 4 days of G-CSF injections which stimulate the production of stem cells so that there are enough of them for today’s harvest.

I think I’ve been quite lucky. The pain hasn’t been too bad, helped I think by the fact I’m already on pregablin, a treatment which blocks pain by interfering with nerve signals. It also helps deal with anxiety so I’d imagine it’s been great in reducing issues. It’s not been totally problem free, and I have had throbbing pain in my back and the base of my skull at times….I can only liken it a bit to labour pains? But since I’ve put that to the back of my mind, I couldn’t even swear on that. Last night was the worst but perhaps there was a level of anxiety in there about today that made it worse? I ended up getting up at 5am and watching The Blacklist as I couldn’t get back to sleep.

It’s all been much better than what I remember last time, so fingers crossed this will continue throughout today. I’m now sat in the Apheresis ward where they have just taken my blood. They will do what is called a CD34 blood test which will check the predicted level of stem cells. I’ll have to wait for a couple of hours for the results of that, but they’re assuming that I’ll be ok given I only need half a million cells (To put that into some sort of perspective, first time round at the Marsden, I got 4 million cells. You generally need 2.5 million per transplant). We’re expecting it all to be fine to go ahead today given how few I need so hopefully that will be the case!

10.15am: Gutted. Just found out that my count is only 8 and that it really needs to be 25+ to be worth them putting me on the machine. So that means that I now have to go home and then come back this evening when they’ll give me a drug called Plerixofor. From what I understand this is a pretty expensive drug, but it is meant to quadruple the count so I should be ok to come back tomorrow. It does cause sickness and diarrhoea so I’ve got that to look forward, alongside more bone pain I imagine.

It gives us an added complication as Rebecca is going off on her DofE expedition tomorrow too (isolating on return we think!). Poor Nick will have to drop me here at the hospital at 8am again, and then drive down to Hereford. Bloody covid means that no-one can help us with this one either.

Oh well. Hopefully tomorrow they’ll get enough stem cells in one go and I won’t have to come back on Friday too.

Update about treatment – maintenance

Hi – Sorry I haven’t updated the blog in a long time. I did pretty well (number-wise) on the carfilzomib/cyclo/dex protocol.  I did feel kind of crummy after treatment, though. By February of 2020, my doctor decided I could do a few more cycles and then go on maintenance. Because of the pandemic, I was …

Dancing in the rain

“Learning that life isn’t about waiting for the storm to pass, it’s about dancing in the rain.”

That sentence is the byline of my blog. I have to admit that it’s been a lie in the most literal respect, as I have never liked the rain and wouldn’t normally choose to walk in it, let alone dance. However, life is strange and sometimes brings you experiences you didn’t know you might need or want…

Before I elaborate, as an annual update… I passed my eight year stem cell transplant anniversary in May and remain in remission and in mostly good health. By the way, my lovely humble donor (see my previous post) is now pregnant and awaiting the birth of another life in late July. I’m secretly hoping it might coincide with my own birthday, because I like patterns and connections.

Anyway, due to my permanently compromised immune system, I have been keeping myself at home since early March, before the official pandemic lockdown in England. Despite living next to a beautiful nature reserve – the reason I bought a house here – it has been difficult to take regular walks there, because the paths are narrow and many people weren’t even attempting to maintain two metres distance from me. There were also a lot more people around than usual. This often meant I had to get off the path into the bushes and sometimes stay there for several minutes, while a stream of pedestrians and cyclists passed by, not seeming to give much attention to the need for distance; often not even acknowledging me waiting for them to pass.

It made the whole experience highly anxious, when the act of walking was supposed to be for both my physical and mental well-being. I began to feel that I couldn’t safely go out. At one point, I considered getting flashing lights or a sign to let people know that I am at higher risk than most. I haven’t entirely abandoned this idea; in fact it’s an art work in progress. 

After one very sunny Sunday, when the whole world seemed to be out in the nature reserve, involving a string of encounters with thoughtless, rude people, even being told I was a stupid woman and should walk somewhere else; and culminating in being practically run off the path by a large group of men on bikes being obnoxious and shouting that it was all a hoax when challenged, I stopped walking there if there was any chance of large numbers of people. In effect, this meant not going at the weekend, or even during the week if the weather was warm and sunny.

Instead, even now, when I’m generally feeling less anxious about briefly passing people, but more people are paying even less attention to keeping distance, my preference has turned to walking when it’s grey, cloudy, cool or cold and yes, even when it’s raining. I wear my headphones and listen to a shuffled mix of music, so on any one walk, I might hear songs that make me slow down and contemplate existence; sometimes cry; fierce punky beats that get me stomping along; mixed in with upbeat, happy tunes. I tend to go with the flow and let myself be moved emotionally and physically by whatever comes on. So finally, yes, I have been dancing in the rain… and really appreciating the freedom to do so.

The metaphor of my byline has come into being in a more profound way too, where the rain is not only a passing storm, but a cloak of safety and comfort in these anxious times, rather than grim, depressing dampness, as I would have perceived it in the past. I haven’t even minded getting a bit wet.

By the way, the video above was filmed by me on one of my walks.

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