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Thanks,
Beth

Latest Posts

Five on Friday

  • Well, I ordered the upright freezer.

That’s the good news. The bad news is delivery is 3 months away. Who knows if it even will be delivered or I will get an out of stock notice. I think I must have gotten one of the last ones.  This Lowes upright was $719. From there they went way up at $1500 and higher.  So we’ll see. But I have a plan for this upright and feel it is a wise investment. Regardless of the pandemic, it’ll be nice to have a 6 months’ worth of freezer stuff and be done with it.

  • Our budget is done for August and all bills accounted for.  I put in for my LLS reimbursement. They have a new format on their website and it is very easy to use. If I didn’t get the reimbursement for insurance I don’t think our monthly income from SS would cover it. So I am very grateful for all who donate to the LLS.
  • We are planning a trip to Costco next week( 1st week of August). I don’t need to go to the store before then so that’s nice. I’m not planning on prepper stuff just normal we need like cheese, bread, olive oil, and some other random things.
  • Tonight is pizza night. Tomorrow I plan on BBQing a pork roast for the carnivores and will probably do a Field Day roast sausage for the vegetarian.
  • I canceled the extra Amazon channels of Brit Box, and Acorn for now as we have watched all the current shows we like. Maybe when some new seasons come out I’ll re-up. But that saves almost $15.00 a month. Then I saw somehow we were paying for PBS masterpiece too so I canceled that. We haven’t watched any of those channels for quite a while so I guess we were throwing that money away. Right now, we mostly watch Amazon Prime stuff and are currently rewatching Death in Paradise which is a good detective show.
  • I need a new book so I  may peruse Amazon for an ebook today.
  • I’ve decided to take a Facebook break. So I’m deactivating my account for a month. I don’t spend a lot of time on Facebook but I just feel it’s time to break away for a while. It’ll be interesting to see how I feel when it’s over.  Maybe my creativity will get sparked again.??
  • okay, I can count and this is more than 5!!!!

 

Radiation Radiation Radiation- Zap You Myeloma

7.30.20

Hello Friends-
Been quite a couple of weeks, months…
Pain, Pain, Pain Extraordinaire!
Assessment Assessment Assessment
Suffer Suffer Suffer
Brought to the brink so many times
Pain is way too humbling
I was too smug for too long, thinking I was dominating myeloma, ha!

I can take a lot, but all this pain and scan information of my crumbling bones, spine, neck, clivus, skull has really challenged my strength…

Radiation all this week… Thank Goodness! Zap and kill those cells!

I’ve been doing 20mg Dex steroids daily to get through this. I have to have mobility and pain relief to get on to the treatment table and in the correct, exact position. Thank you killer steroids for helping as an anti inflammatory! But yikes, I am so bloated up from this dose, and feel so FAT. Can’t wait to get back to “normal” hahahhaaaaaa. Normal, hahahhaaa… never again, sadly :((

Hoping for relief
Hoping to kill some myeloma cells
Hoping to untangle all the angry nerves and muscles wrapped up in tumors, lesions, holes, masses, etc. I feel so fragile, and hate being so limited.

I just didn’t think Myeloma would eat Me up like this… I’m always thinking “I’m different”, that I will defy the odds… (well actually I have with my almost 11 years (probably a lot more) of survival…  But, cancer and myeloma just doesn’t care who you are, how much you try to be ok.,. how positive you are, how informed you are, how well you are treated, how much fight you have, etc. Myeloma will just gobble you up alive… biology and chemistry is just so powerful, and we only have so many tools in the toolshed to fight back… Thank goodness for all the brilliant medical science researchers out there always researching the next option for us.

https://www.cancer.gov/about-cancer/treatment/drugs/multiple-myeloma

https://www.myeloma.org/multiple-myeloma-drugs

https://themmrf.org/multiple-myeloma/treatment-options/standard-treatments/

https://www.myelomacrowd.org/myeloma-news/

If you have your Health, you really do have “everything”… if you don’t, you don’t. Real Pain, deep spirit killing pain, prolonged pain, limiting your life and movement pain, just steals your life, energy and optimism…

Here’s my recent Radiation pictures, and I will update the whole story with what the heck is going on with me…

Best care ever at Kaiser!
Best son ever driving me to my appts
Can you find all my holes, lesions, tumors, mass?
Let’s get this Radiation party started!
With the damage to my Clivus, spine, skull, neck area
I’m in danger of becoming a “Bobblehead”! or worse, 
Paralyzed from a break!!!
Rods, pins, surgery, Kyphoplasty  
If radiation doesn’t work??
Git er done Radiation!
Zap those crazy myeloma cells
Ouch! This crazy Clavicle mass, hole, tumor
with the muscles, nerves pinched and wrapped around and in it
Such intense, immobilizing pain
Best caregiver, driver, chore daughter ever!
Can you find all my holes, lesions, mass, tumors? 
Wish I knew how to really read these scans
Don’t move Julie!
Wow, then they snap this mask in to the table
to hold me steady, whew
If it’s not perfectly aligned…
Owwie!!!
Such amazing Technology
LOL, didn’t intend to match so perfectly!
And I’m all ready for Halloween
Do you have a Mask as cool as mine :))

Myeloma Beacon Patient Stories:
https://myelomabeacon.org/tag/patient-column/

Love Dr Durie of the IMF – International Myeloma Foundation
Great question and answer videos re everything Myeloma!

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Hot Weather continues

Today we are 100 degrees. It is really getting old that it is just day after day of heat. The mornings start off nice and then by noon it’s hot.

It looks like this will continue for at least the next week. I mean it is July/August in California but still…

The NP, in the video conference, did tell B to lower the Jakofi to one a day till we see how the hydration is going. I’m pretty sure she talked with Dr. Abedi and voiced my disapproval/concern about the creatine being linked to when he started the 2nd Jakofi. So I guess we’ll see.

I haven’t been too inspired to cook( too hot) but I did make a nice brown rice salad last night for dinner. It was brown rice, carrots, green onions, a few olives, a nice zucchini from the garden, tomatoes from the garden and some parmesan cheese. It was good.  I also made kinda a green dressing with parsley, basil, and a little thyme. I put it in the Vita-mix with lemon and olive oil. I had tried it in the food processor before and it didn’t seem to pulverize it. I’m wondering if the food processor just doesn’t do that. If that’s what you have happened let me know.  So I think my son is planning on cooking some fish tonight( mahi-mahi).  Not sure about the vegetarian option but the rice salad and maybe a beyond burger. No one seems especially hungry at dinner time so maybe we should do a few YOYO nights.

I ordered a few used cookbooks to purview.  One is actually one I gave away years ago. A vegetarian cookbook from Ananda.  I found it on amazon used so with our pet bookstore closed I decided to get it. I had ordered a book on eBay about southern cooking but then it was not in stock even though I paid for it so now it’s hanging out there to be refunded. Oh well, not good communication on the seller’s part.

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I offered up some sourdough starter on our Nextdoor neighbor site. I have way too much starter. So I had one person interested so I gave them 2 jars. I still have a quart in the fridge.

 

The week ahead…

First looking back over the last few days.

Still really hot here making it hard to go outside and do much except for early in the morning.

We picked up some oak barrels at Home Depot to replant some bamboo in. I love putting bamboo in barrels as it looks lovely.

Years ago, probably 20, I went to a Waldorf parents house who had golden bamboo. I dug up as much as I could( believe me, back-breaking). But that is what we have as a privacy screen all around the driveway area. But we put some in barrels as it contains it and makes a pretty visual effect. We have these two barrels outside our bedroom window. But the old barrels had deteriorated and were no longer holding water so they will be replaced. I’m guessing these were about the same age, 20 years.

Then Barclay’s labs came back with very high creatine( not good) because of the new drug Jakofi. We both kinda flipped out since the NP kept saying hydrate which he was doing obsessively. He will need to go in for an IV hydration if his numbers remain high. I’m really bugged by this as it all started with the Jakofi. It’s a great drug for GVHD but he’s still on other stuff and it’s hard on the kidneys. So I asked why not drop the Jakofi to 2 a day then 1 a day and so forth. No answer on that yet. So we were definitely bummed out for a few days. We’ll see how the labs are this week.

I had worked on learning how to butcher a whole chicken. I saw a youtube by ProCooks, who I like, and thought well, I could do that. It’s fairly simple just kinda involved so not sure I think it’s worth doing regularly.  Then I made Pioneer woman fried chicken and it was A LOT of Work. Not doing that again. Plus the kitchen ended up looking like a vat of oil exploded. It was tasty but I wouldn’t say great. I think I’ll stick to Southern-fried tofu.

Today is my Flylady morning in the LR zone. Definitely an EZ zone for me with just some deeper dusting and window cleaning.  Generally, it takes 10 minutes tops.

I’m going to get out the bread maker and make some WholeWheat sourdough. I just use the bread maker to make and rise the dough and then I bake in the oven.

Other than that an open week.

I’m making lists of my barn prepper pantry items so I can determine how many weeks/months of stuff we have.  I want to have a balance of pantry security and not going overboard with the ‘survivalist’ mode. I did order some dried Whole milk to put aside in case of either a power outage or unavailable at stores. If anything, I can use it in baking.

I found a book at our little free library, “Radio Free Vermont

. Pretty funny book and is contemporary as Trump is president. If your library has it, I’d recommend it for a fun read.

Here’s an interesting bit of news from our area. We used to live in Foresthill. From 1975 when we came to California till 1995 when we moved here( about 20 miles difference) with Auburn being in the middle and everyone’s main hub. ( mostly). So we lived near a road called Yankee Jims. Very remote and goes down a very windy, steep and treacherous dirt road( some of the way) to the North Fork of the American River. There’s a bridge there that, if I remember correctly, was one lane. Anyway, there’s parking on the side of the road for maybe 10-15 cars MAX!  Last weekend there were 313 cars down there, blocking the road both ways. So now the whole area is shut down and no cars can go in. WHY PEople!! So STupid!

Oh and another STUPID controversial thing. I was looking on Youtube for prepper pantry ideas so I clicked on this one called Alaska Granny. I thought it looked interesting. Younger than me, so not sure where the “granny “comes from. Anywho, this was right after the debacle with GOYA foods. BOYCOTT GOYA!! BUT, this lady does a whole vlog on GO OUT AND BUY AS MUCH GOYA FOODS AS YOU CAN TO SHOW SUPPORT FOR TRUMP AND THE OWNER OF GOYA.

Really??? oh well, takes all kinds. I guess she thinks Trump is cool or some deluded thing. Really, he’s sending federal troops into cities for political shit.  Really, people, he’s a narcissistic nutcase.  History will show this to be one of the worst periods of American politics.

OK, I’ll get off my soapbox now.

 

 

MY YAESU FT-991A & HRO NIGHTMARE!

I’ve been a amateur radio operator since October 16, 1996, Amateur Extra class licensee since April 1997 and have owned several radios over the years, but until recently I had never purchased a brand new radio, I’ve always bought second handed radios to save a lot of money. I started out with a Icom IC-745 I ran for my first 8 years on HF, then a Kenwood TS-570D I ran for 4 years, and then a Yaesu FT-1000MP Mark-V (I’ve owned two of those now since a direct lightning strike tore up my first one. 

Well, when Congress announced the stimulus check that went out in April 2020 I decided I was going to purchase a Yaesu FT-991A from HRO (Ham Radio Outlet). I found a open box one at the Woodbridge, VA location that was priced at 10% savings plus $100 off on a instant coupon discount being offered by Yaesu and $30 off in the Spring Savings sale being offered by HRO that were set to expire on May 1st, 2020. I bought it on April 29th before the discounts went away and after NC added their 7% sales tax of $73.50 I got the radio for a total purchase price of $949.96! 

I received the radio on Friday, May 1st, but never got to enjoy it until the following week because apparently HRO never ever bothered to check the radio out after the original buyer returned it within 10 days of the date of purchase because there was no power cord in the box with the radio! I spoke with Steve Gilmore, W4HSG, HRO’s National Sales Manager, via email and he shipped me a power cord the following Monday, May 4th that arrived Tuesday, May 5th, 2020. I ran the radio a few days and really liked all the features, but then it began having a problem. The power output on HF would be working fine and then suddenly the meters stopped working and so did the transmitter power output. I could turn the radio off and then back on again and it would start working again, but only briefly until it would do the same thing again. I called Steve Gilmore and he had UPS come by and pick the radio up on Monday, May 11th. Steve said they didn’t have anymore FT-991A radios in stock, but he would ship me a new one as soon as they did. 

Well, I emailed him on May 25th, 2020 and ask him if he had any idea when they would be getting them back in stock and he replied, “we have been told the first week of June”.  Over another month went by and on June 30, 2020 I emailed Steve Gilmore, W4HSG, again and said, Do you have an update from Yaesu on the arrival of the FT-991A’s? Also, it would go a long way toward future purchases/sales if you would take a few minutes of your time to keep your customers updated on things like this rather than make them have to contact you instead. 

Steve never even replied to my second email and to this date he never has! I found out on Friday, July 17th from my friend Donnie, KN4RA, that HRO had the FT-991A’s back in stock at 7 different HRO locations although Steve Gilmore nor anyone else at Ham Radio Outlet in Woodbridge, VA bothered to email, telephone, or notify me of at all, nevermind they had almost $1000.00 of my money they had since April 29th, 2020! 

I called them on Saturday, July 18, 2020 and the guy who answered the telephone at first acted like he didn’t know what to tell me and told me he would telephone me back that day and let me know something. Well, he kept his word and at 4:56 PM he called me and told me he was shipping me a new radio on Monday, July 20th and it arrived via UPS on Wednesday, July 22nd! Finally! They shipped me a new in the box factory new FT-991A! 

I learned one thing from this experience and that is when spending a thousand dollars on amateur radio equipment good customer service is of utmost importance, something HRO in Woodbridge, VA and that Steve Gilmore, W4HSG, HRO’s National Sales Manager, don’t seem to grasp! Also, I learned from this experience that I will never ever purchase another item from Ham Radio Outlet! I’ll go with Gigaparts, DX Engineering, or any company that treats me like they would want to be treated themselves if they were the customer! 

I could have just let this slide and not mentioned a word of it to anyone, but if me posting this saves just one person from getting jerked around by HRO’s customer service the way I was I will have accomplished what I set out to do by telling my story. I still don’t understand why! Did they think I was just a dumb NC Appalachian mountain hillbilly they could do any old way without any repercussion? I have no idea why!

HRO needs to adopt the strategy that a man adopted in 1912 when he bought a chain of 3 stores called “The Golden Rule” stores because the Golden Rule says, “Do Unto Other As You Would Have Them Do Unto You”. This man made a great success of his business with that strategy towards customer service. The man’s name was James Cash Penney, but he was more widely known as J.C. Penney. 

*Note: I have receipts & emails to support everything I have stated in this blog post. 

Revised: July 28, 2020


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Test results

Yesterday I received the results from my Covid antibody test AND my routine myeloma tests. Yesterday was definitely an important day!!!

So, even though I’m super busy today, I just had to stop and write an update.

First, I tested negative for Covid, which means that I have never been exposed to it. I opted for the more complete antibody test, the one where they draw blood from your arm. There is another test, a mere finger prick, which tells you only if you are positive or negative. But I wanted to know if what I’d had back in January was coronavirus or not. Well, I have my answer now: it wasn’t Covid-19, it was “just” a very bad case of the flu. I guess I’m relieved, since apparently the antibodies don’t protect you from getting Covid-19 again… Anyway…

I also received my regular test results. I began crying as I was going through them. Yes, yes, yes, silly me, I got all emotional. You see, I was supposed to have tests late last year, but I got sick in December, then again in January, so I had to postpone. And then, of course, we were in a lockdown situation over here (which saved many many lives!). And then, when the country began reopening, I didn’t think it was safe for me to venture out much, especially to a lab. So I hadn’t had tests in a very long time. And, I admit, I was worried.

Well, I needn’t have worried at all. My results are excellent, to say the least.

My M-spike, for example, has gone under 3 g/dL for the first time since 2012!!! It’s 2.9 now. Amazing!

My total IgG has gone down 820 mg/dL, which takes it to 2010 levels. I would like to note here that in 2013 all of my main markers worsened…It was a very difficult, stressful year for me and for Stefano (not for our relationship, which has always been very very solid). My total IgG shot up to slightly over 6000 g/L, which really scared me, and not just me. But, in agreement with my doctor and Stefano, I worked on getting my stress levels under control, among other things. Well, those efforts paid off. That number started going down with every single test, slowly but surely. And now we’re back in the 3000 mg/dL range. It’s taken time and dedication, but, amazingly…I did it!

All my other markers are good, too. Either they’ve gone down a bit or they have remained stable, in the normal range, mostly. My IgM and IgA, of course, are still VERY low, but they are the same as they have been, as far back as 2016.

Hemoglobin and hematocrit = normal range. My red cell count is slightly under the normal range, 4,10 instead of 4,20, but it’s higher than it was last year (3.86). White cells, platelets, calcium, uric acid, creatinine = all normal. And…no Bence Jones.

There are a couple of negative items. My Freelite chains are slightly higher than they were last year, but they’ve been even higher in the past, so I’m not concerned.

My B2M concerns me more. It should be a maximum of 2.5 mg/L, but it’s 2.9 now. However, like the Freelites, this marker has also been higher in the past…In fact, it was 3.0 last year. So, again, no big concern.

All in all, therefore, THREE CHEERS FOR THESE TEST RESULTS!!! I’m super relieved, super pleased. Tomorrow we’re going to celebrate…We’re having a couple of close friends over for lunch and will spend the afternoon watching their little girl play with Potter. Hehe. Fun!

Come to think of it, I wonder if the anticipation of getting another cat had something to do with my good results. Did Potter work his magic on my tests?

Who knows…! 😎 

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Putting things up

I made a quick batch of pickled jalapenos this morning.

 

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We use these all winter. They are not canned but just refrigerator jalapenos. It says they are good for 2 months in the fridge but we are just finishing ajar from last fall so I’m guessing they last a lot longer than what the recipe says because it’s just vinegar and water and some sugar.

Also, at Winco we SCORED gamma lids and some buckets. These are seriously expensive on Amazon. They’re probably not quite as good as the Amazon ones but they’ll do the job of sealing the buckets. AF23071C-19BD-4C6C-9865-F0B4CA78E2BE

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I have the black beans and points to put in the 5 gallon buckets but I’m waiting on the mylar bags to separate the beans. I could vacuum seal them so I might do that but the mylar I guess are  better for longer term storage.  The mylar bags are not coming in till the first week of August so I’ll have to see what I want to do.

I rearranged the prepper pantry in the barn and moved all the non food( well almost) to other shelves that used to hold all my magazines. It looks good and based on what’s there I’d say I have almost a year for some things and 6 months for others( TP).

I was watching a few youtubers who are preppers and the recommendation was a cooler dark place. We do not have a closet to use in the house as there is only one real designated closet albeit that it is large. So I got to thinking maybe we should build a closed in cabinet in the barn. I’m not sure since the barn does not get any direct sunlight in there and is generally on the cooler side. I don’t know, I’ll have to think on that too.

I tell you though, some of these preppers are really out there with survivalist stuff. I sorta ignore all that and just try and glean some ideas about storage.

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Some of my orchids are reblooming which I’ve never had happen. It must be they like where I put them which was actually an accident. I had put them on B’s to get them out of the way and sure enough the morning light and then the coolness from the windows at night must be the right condition. Excited to see if it happens again.

Getting ready…

Today I’m back at the QE for lung and heart tests. They always do these before a transplant to check you’re healthy enough – keeping my fingers crossed there’s nothing to worry about! Sure there won’t be.

I’m feeling pretty healthy at the moment, if a little bit fat! I’ve signed up to the London to Paris virtual bike ride for Myeloma UK – you get a month to ride the 508km to Paris! I’m feeling slightly proud of myself as I started it 2 days after my stem cell harvest, and after 5 days have done 60% of it! I’d really like to finish the last 170km today and tomorrow!!

I’m not actually trying to fundraise on this one as I’d really like to do the real thing in May next year and I’ll need to ask everyone then so that I can raise the £1,500 sponsorship target. That’s on top of the £1000 I’ll pay out of my own pocket to take part! But if anyone does feel the desire to donate, they can do so here.

I’m also hoping to find a bike company who might donate/ help with the cost of a bike/ equipment so if anyone can help please let me know! I’m happy to advertise them on social media and the local press if so!! Currently trying to decide between a normal bike and an ebike- I’m likely to only be 4-6 months post transplant and far from full fitness so an electric bike might have to be the answer.

I’ll decide after I’ve had the transplant whether to go ahead or not – I think I have till Christmas to register. So we’ll have to see whether there are any complications and how well I am before I commit.

In the meantime, I’m trying to look into whether there are any benefits in doing my transplant privately. I’d get the same treatment I think, and at the same hospital, but possibly sooner and even more importantly, I think I’d be guaranteed a private room. I was lucky at the Marsden last time. Because we had young children they were able to give me a single room from day one (I also suffered from sickness and diarrhoea from day 1 so would have been put in a single room anyway). But that isn’t guaranteed a second time round and it does worry me. It’s not nice sharing private intimate details with strangers (other than on a blog of course 😂). So I’ve asked my consultant if it’s something worth looking into and we’ll go from there.

Welcome, (Harry) Potter

Some time ago, Stefano and I decided that we wouldn’t adopt kittens anymore, not because we don’t like kittens, on the contrary, who can resist a KITTEN?, but because there are so many adult cats who need good homes. Getting adopted is much harder for adult cats, especially if they have any kind of physical disability or if they are elderly or…whatnot. And so we made up our minds: no more kittens!!! Our rule became: if we come across an adult kitty that nobody else wants to adopt, we’ll adopt it.

SInce then, I’ve learned a lesson: never make any rules where cats are concerned…

About two months ago, after the end of the coronavirus lockdown in Italy, a close friend of mine lost her beloved cat of 17 years. She was absolutely devastated. Since I have experienced that kind of grief, too many times!, she and I spent a long time together in that first period in particular. She’d come to visit me, and we’d both wear masks. Very odd, that! But, necessary, of course. 

Her partner, also devastated, wanted to adopt another kitty, even though he knew, of course, that you can’t replace one cat with another. He thought, however, that it would lessen their grief a bit as well as help their 4-year-old kitty, who was clearly confused and sad, having been extremely attached to the cat they had lost. She was still wandering around their apartment, looking for him, eating very little. Cats mourn, too…That has been proven in studies, but I have seen it myself, with my own cats…

But my friend, whom I’m going to call Ale from now on, wasn’t ready. She said no, no more cats. Typical reaction. I’ve had it, too…

Well, soon after her “no more cats” pronouncement, Ale got a call from her cousin, who had recently become a Maine Coon breeder. On May 4, her female cat had given birth to a litter of gorgeous kittens.

And that is how Fate intervened.

Ale and her partner went to see the kittens and picked one: a male, all black with a white bib and a splash of white on his toes. Adorable! Of course, there was a waiting period before he could be separated from his mother…

While waiting for her kitten to reach the age of 2.5 months, Ale took many photos of all the kittens and their pedigree parents. Wow, I thought they were the most gorgeous creatures I’d ever set eyes on. I knew about Maine Coons but had never even seen one in the flesh. I was curious. I went online and discovered that they are great family cats, very sweet, good-natured, friendly, playful, loyal, affectionate…the list of excellent qualities goes on. I began being very curious to meet that Maine Coon family…

And then Ale told me that all the kittens had been chosen…except for one of the males.

Stefano and I began talking about adopting him. It was a joke at first, it really was!, but then we began talking about it seriously. We were bothered, however, by the fact that we’ve never paid any money for a cat, well, except for adoption expenses such as taxes. We just couldn’t wrap our heads around the thought that we would be BUYING a kitten, with a pedigree!, when there so many needy (ADULT!!!) cats in the world…Besides, what about our rule???!!!

So I came up with an idea. I figured the cousin would say “NO, no way.” In a nutshell, I told Ale that IF her cousin couldn’t find a home for the remaining kitten, we’d be happy to adopt him…at a discount, though! I told her to wait until just before the kittens were ready to go to their new homes, but Ale was so excited that she told her cousin immediately. And, to our complete surprise, the cousin agreed to give the kitten to us. And yes, at a discount! We were not expecting that!

We later found out that Ale’s cousin had turned down many full-price offers for this kitten. She hadn’t become a Maine Coon breeder for the money, since she and her husband have their own businesses and are doing well. They both simply love Maine Coons, so she wanted to make sure that the remaining kitten would find a loving family where he’d be well taken care of. When Ale told her about us, about how fabulous we are 😎 , the cousin knew we’d be right for the kitten and decided to give him to us. First, though, Ale took me to her cousin’s house to meet all of them, humans and felines. Her cousin and I really hit it off…and then I took one look at the kitten, and my heart melted. We finalized the agreement.

Incidentally, many odd circumstances surrounded this adoption. One was that all the kittens were ready to be taken to their new homes on Saturday, July 18, which is my birthDAY! (Yes, I turned 59 on July 18…And to think that when I was diagnosed with SMM in 2005, after six years of living with MGUS, I thought I’d be dead within ten years at the most, probably less. Yet here I am, 15 years later, very much alive…and now, I have a Maine Coon cat, a cat with a PEDIGREE, which I also considered an impossibility! Very amusing, I must say.). And there were other coincidences…but I will spare you the long stories.

Point is: we went to pick up our new kitten-with-a-pedigree on my birthday. The best birthday present EVER!

We named him (Harry) Potter.

Potter, for short. Of course! 😉

It turns out that we picked the right name for him. When we introduced Potter to our adult cats, there were mixed reactions. Pandora simply disappeared whenever he entered a room. Poof! Like magic. Harry Potter magic. 🙂

Pinga ignored him (“if I don’t look at him, he doesn’t exist”). Pavarotta hissed and growled at him whenever he got too close to her.  Same for Prezzemolo, who kept his distance…still does a bit, actually. Peekaboo began by hissing at him and looking very cross, but he kept on running/hopping over to her and putting his nose up against hers, which startled her so much that she stopped hissing. I’m sure they will get used to him. Pixie is the bravest…She’s more curious than afraid of the little ball of fluff. So the introduction has gone and is going VERY WELL. As for Potter, he goes about his business, playing, eating like a T. Rex, without a care in the world. If he gets hissed at, occasionally, he stops in his tracks only for a nanosecond, then keeps on going…

What else can I say about Potter? He is the most adorable kitten in the world, of course! He’s funny, smart (he’s already figured out how to play all the cat games we have, and he loves cat videos, too!), loving, and, of course, devastatingly handsome.

This little furball (soon to turn into a huge cat, at the rate he’s eating!) has brought such joy, such happiness into our lives, NOT that we were unhappy before, mind you, but he’s certainly a shining star…our shining star…

So, welcome, welcome to our family, Potter!

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My Stolen Life…

7.20.20

Hello Friends,

My physical PAIN suffering is off the charts. This bone, muscle, nerve, tumor, lesion, mass, myeloma cancer pain is doing me in. I can’t even convey the level of pain, and how I hurt, and how simple everyday, ordinary tasks hurt so much to even attempt to do. I ache so much. I cry too often now. I cry from physical pain. I cry because I am so very very sad about what has happened to me that I have no control over. Myeloma is in control. Myeloma is eating me up like Termites to Wood. I’ve never been a “crier” as I never let things build up inside. Nothing wrong with crying. Clears the soul in many ways, but not this time. Even crying hurts. Hurts physically. Serves no purpose for me. Sobbing last night, I stop, and say, “just Shut Up Julie, just Shut the F up Julie, no one hears you, no one can help you, just Shut Up Julie, crying servers no purpose and just tenses your body even more, just shut up Julie”… I grimace, I deep breathe as I try to get into bed… I hurt so much… I stop crying and eventually fall asleep for a few hours…

It hurts to brush my teeth, to lift my arms, to move my head, to bend my arms, hands, neck, etc. It hurts me everywhere my upper body moves. It hurts on both sides of my collar bone and shoulders and arms, up my neck and in to my head. Everything I want, need to do is stolen from me. I want to do chores, clean my house, do laundry, shower, change my clothes, do animal chores, lift food to my mouth, open medication containers, water the plants, fly spray the horses, clean the corral, do inside animal chores, do anything I used to do so easily. Reaching to wash my hands aches so much. I feel the nerves, muscles, tightening, tearing, hurting so much with this simple, so needed task. I do it anyway. My eyes tear in pain. My heart skips a beat in physical pain and mental recognition of my situation. I just want to do simple things in my life. I can’t drive right now. I am dependent on others. I hate that. My wonderful adult kids have been driving me to Dr appts and lab tests. I hate being dependent. I hate needing, asking for help. I was always the Helper, not the Needer.

Little controlled me before Myeloma… now myeloma controls every aspect of my life, my being, my days, my nights. I cry from pain. I cry from feeling so out of control. I cry from feeling desperate for relief. I cry because I just hurt so much. I cry because I force myself to do things. It hurts to do anything I used to do so easily, so presumptuously. I cry because I am so limited with pain. Typing this painful. Everything I attempt to do creates excruciating pain. My life is stolen. The ability to do simple tasks has been taken away from me. I don’t understand what happened to me. I don’t understand my suffering. I don’t understand why I am being so tortured. Yes, why me? Why life? Why, I cry out…. I “ugly cry sob”. This is not how I imagined this time of my life…. I cry out how I “hate my life”… I correct myself… I don’t hate my life, I hate what my life has done to me, what my body has done to me, what myeloma has done to me, what cancer has done to me… why? why me? I am so sad…

LOOK AT THAT! BONE PAIN… 
I’m not imagining this. Bone pain is Excruciating!
Think about all the things you do. Little, big. routine, required, fun. Things we all take for granted, and assume we can always do. Think about how each and every one of those is now a huge painful challenge for me. Simple things, huge pain. Huge ridiculous, painful challenges. My stolen life…
I must take a break here. Typing and using the mouse hurts so much. But I have a story and pictures to share with you of my first Radiation consult from last Thursday July 16… here’s a hint…
Yep, that’s me in there!
I’ll be back in a few hours, promise, as this story has a super funny twist :)) 


!!!! Updated below :))

And I just got notification of lousy IGA upward moving stats :((
720 points up in just 10 days without chemo

Grrrrr!@#$%%+*** !!!!

UPDATE :))
UPDATE
UPDATE :))
So this last Thursday, my son drove me downtown for my Radiation planning consult appt. With all this stikn pain, I can’t drive myself anywhere, as I don’t have the ability to move fast, turn, react, etc. Not doing LA freeways in my condition. 
I wasn’t sure what they were going to “do” with me, thought this was just a verbal “planning” appt. Turns out, I needed another CT scan for the awful Clavicle, collarbone, shoulder pain. Makes sense, just didn’t know it would be done. When the Rad Tech explained what the Plan was, I was… oooohhh nooo, I can’t possibly lie down flat on the CT table for a scan. The pain would launch me to never never land, and I probably couldn’t get down or up from the narrow table. Well obvi Julie, if you can’t do the scan, they can’t move forward, so I convinced myself to absorb more torture and agreed. 
I remembered I had a little pill container with Tylenol in it, in my purse. So I CHEWED 2 “generic 325” Tylenols. Scott’s laughing that I just chewed them, but that’s what I do regularly now, and have for a long time, as 1- it takes affect faster, and 2- I just don’t swallow pills well anymore, as I have to swallow so many, and I sometimes just can’t swallow them without my standby protein shake drinks (like Ensure) … After I chewed the 2 little white pills, something made me look back in the bottle and check what they were. OMG there was one left, and it DIDN’T say 325!!! It said 512… Google that friends…
From Google: “People ask…
OMG, what the F did I just do. I’m laughing, scared and laughing. Scott’s incredulous of what I have done, and says, Wow Mom, you’ll be feeling pain free in no time”… ahahahaaa
I asked the Tech and Nurse for water, and explained to them and the Dr what I just done, and they laughed too, and weren’t worried, even though I explained I’d never taken these before, and that they must have been my husband’s RX from a while ago, for Spinal Stenosis and his venous ulcers from his blood clot destroyed leg… 
OMG, I turn myself into a science project all the time. Just couldn’t believe what I had done, and really the only worry I had, was if I had a GI reaction… can you imagine becoming GI sick, while restrained on the CT table. OMG, Julie… the drama never lessens. 
So I went with the Rad Techs to the CT room, not feeling anything different at all, got onto the narrow, sliding table with their help, and waited for a reaction. And I waited. And I waited. And I waited. LOL nothing. Nothing from Norco a week or so ago. Now Nothing from what I found out was Percocet. Nothing. No high, no low, no extra relief. Probably the only relief I got was from the little bit of Tylenol mixed with the Oxy. So I made it through the scan, and also through the forming and fitting of the personalized head protector, mesh head stabilizer mask with no drama, no issues, with no notable fun druggie relief feelings. Nothing, no extra pain relief at all. How crazy is that. Nothing lol. Nothing. 
All this confirmed again, my magic formula for nerve, muscle, bone pain is DEXAMETHASONE STEROIDS, with plain and simple Acetaminophen Tylenol and Flexeril muscle relaxant. And those really don’t do much either. Just takes the “edge” off. Would have to take double dose of Flexeril to probably really feel relief. But I won’t do that to my body….
Guess this cowgirl has a pretty high pain tolerance and pretty high resistance to drugs lol.  
So I go back this coming Friday for the final mapping and maybe my first Radiation treatment. Bring it on, can’t wait. Let’s git er done! Zap these outta control myeloma cells causing me so much pain and grief! 
The things I’m able to do.
Thank you Dex steroids and Tylenol
Pretty cool how they make the mask.
Wasn’t expecting that at all. 
It’s a soft plastic mold, that is mold-able, pliable in the beginning, to shape.
As the Techs put it on me, they told me it would warm, steamy and damp.
And gooie. 
Felt kinda like making a dental mold and having a facial at the same time.
I’m ready for Halloween now!
And I get to keep this party favor when all my radiation treatments are over. 
I still can’t believe this story is my story
And we have a new rescue doggie
She’s the black one. 
She’s from Arkansas.
Only one missing in this picture is our
brown Lab
The craziness never stops here, but it sure keeps me going!
Yes, every day is an adventure here. Horrible and Wonderful at once. How was I able to post this today? DEX STEROIDS from this morning, thank you very much my fave friend. My arm is killing me still, my neck is cramped, the clavicle tumor bumps against things when I move, and my muscles and nerves burn and pull and hurt, but less than last night, or yesterday, etc. 
Dr consult tomorrow and I will insist on being back on some sort of chemo. I feel very uncomfortable letting the myeloma grow outta control while waiting for the Radiation to be completed. Chemo is systemic and kills the myeloma throughout the whole body. Radiation is targeted to the specific areas of my current pain, tumors, mass, lesions, holes, etc. 
Earlier the Pain management Pharmacist called and we talked about my pain med options. She was incredibly helpful and encouraging. When the Dex steroids wear off, I will try the Norco again. Or not, not sure. We’ll see. I’ll let you know. 
Thank you for reading and caring and following my crazy almost 11 year myeloma story. Hope you are doing better than me, and doing ok in these crazy Virus times. 

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