The Invader – #14 (part one)

So I mentioned a hospital stay, so I have some events to catch y’all up on. Sorry it has taken me so long to write this! I’ve thought of it everyday – trying to condense it all so it won’t be so long but a LOT did happen….

In the last update I told about re-starting chemotherapy (begun April 30th). I had had a couple of 3 week cycles with this drug – let’s call it Xdrug – last summer and the side effects weren’t too bad so I felt pretty good about this course of action. All the scans showed that there was no metabolic activity in any of the lesions, so the chemo was to rid me of any cancer that happened to still be in my system and I also received another drug designed to deprive cancer cells/growths of their blood supply. As time went on and I had more cycles of Xdrug, the side effects got worse and worse. By the end of June I had at least 7 side effects that were troubling me quite a bit and getting progressively worse. In the interest of brevity (as well as not making everyone feel sorry for me), I won’t list them all out for you. I was losing a good deal of weight because of the nausea, complete lack of appetite and most everything tasted terrible (all Xdrug side effects); I was probably eating maybe about a cup of food or less each day – and I was trying as hard as I could! By mid-July, I had to stop taking Xdrug for a few days because I couldn’t keep it (or anything else) down my gullet. Studmuffin says that I was like a zombie during this period. When next I saw my oncologist, he had me in the treatment area at the Cancer Palace for two consecutive days to take IV fluids because I looked so bad! I didn’t get much better so next he told me to go to the emergency room which I did. FYI – Thursday morning is a pretty good time to go to the ER; they saw me right away with little waiting time.

While in the ER, I got tested for the Corona-virus and had to wait about 5 hours for the result. While waiting for the results, I spent most all of that time really thinking deeply about what might happen if it came back positive as I have several co-morbidities. Even if I had a mild case, as sick as I was at that moment from the chemo, could I even live through COVID – 19? What should I be doing to avoid contagion – was I really doing everything I needed to do? By the time my test came back NEGATIVE (YAHOO!) I had made a number of resolutions about how I would limit my exposure to the virus once I got out of the hospital…that is IF I got out of the hospital alive.

I was far more ill than even I realized because I was admitted to the hospital as a patient. I have an intravenous port in my chest that was implanted a year ago to aid with chemotherapy. I was so ill and malnourished that there were 4 tubes of medications, fluids and nutrition flowing into my port, and I also had an IV in one of my arms to administer other drugs that don’t “play well” with the things I was receiving through the port. On top of all this, I was having “elimination follies” – no I won’t give you the details. Suffice it to say, the first week I was in the hospital the elimination follies had the docs concerned that I might have a bowel obstruction in the small intestine and surgery was seriously considered. Since I really couldn’t eat/keep anything down, after a few days an NG tube (Naso-Gastric; thru the nose into the stomach) was installed. That NG tube has to be one of the most uncomfortable medical experiences of my life; remember, I’ve been through open heart surgery so you know it was BAD. The NG tube was not for feeding; it was to remove via pump what was ultimately liters of a black/dark brown liquid that was collecting in my stomach. In my opinion, that liquid was the result of my body trying to rid itself of the Xdrug that I was having a toxic reaction to. Since I was hooked up to so many tubes, it became impossible for me to get to the bathroom by myself in a timely manner. Remember, I have all the fluids pumping into me via the port and IV so I absolutely have to go to the bathroom every few hours. I was so gravely ill that I really didn’t care that I had to abandon any sense of shame or dignity at this point. The nurses and the techs who looked after me were TERRIFIC and very professional;I am SO grateful.

Friends, I was in that hospital for TWO WEEKS. That’s by far the longest I have ever spent in a hospital as a patient (I’ve had five major surgeries and birthed 3 children so I’ve spent as long as 5 or 6 nights in a hospital before).

I think I’m gonna break this post into two (yes this IS the condensed version!), so be looking for Part Two in a few days.

The Invader – #13

****FYI**** I wrote this post in early July 2020. I’ll be writing another post soon about my recent hospital stay and current condition. 🙂

 

So I’m on chemo again – a somewhat different kind of chemo than before. It’s not as hard on me as the one last summer/fall……except for the fatigue. I’m just wiped out most of the time. Some of the other side effects are making things taste weird, nausea – still losing weight because of this and not on purpose :(, and my skin – especially on my hands and feet – has taken on a kind of papery/leathery condition so that callouses peel right off and I must use a lot of lotion, especially when combined with the handwashing we need to do now. In addition to the neuropathy in my hands -pain and numbness together, some is from diabetes, some is from chemo – the leathery skin is quite sensitive, so I cannot knit and can barely play guitar. I’m determined to play guitar though – I do not want to lose whatever skill I’ve so painstakingly acquired over the years. I could probably sew, ‘cept all my sewing stuff is in boxes at the moment (we took up the carpet and haven’t really decided what’s next, so everything is in boxes in the garage). I also seem to have become a little bit allergic to one of our dogs. She sheds plenty, so my nose runs a lot. What an adventure this all is…….I keep telling myself this – it does help most of the time.

In my mind I can run like this anyway…

The fatigue is a real grind though. I get up and try to act normal for even 15 minutes – say, just making a cup of tea – and then I have to go lie down for at least 15 minutes. I also have to be careful, if I fall asleep, that means I’ll have trouble sleeping at night. I guess I should say *more* trouble, as insomnia has been a nearly constant companion my whole life. The chemo is over a 3 week period – I have one week where I’m not taking anything and I start to feel a little more normal, a little less fatigued and then then next week, I’m back to near-zombie levels. Fatigue is really, really boring. You’d think oh now I can read a lot. Nope – can’t really concentrate well enough. Audiobooks are good at night if they’re not too interesting; if they’re too interesting I stay awake. If they’re too boring, I get frustrated. I tried to take part/watch an online conference I was very interested in, but like a fool I didn’t sign in on my tablet, I signed in on my ‘puter. So I’d watch for a while, then go lie down for a while. If I can drink a little caffeine it helps but it’s hard to drink right now since everything taste so strange. It seems to me daily just a waiting game for me – when will I feel better? I want to work in the garden just a little and even the thought exhausts me. Writing this post is taking 50 times longer than usual. AND I’m even more forgetful now – chemo brain is REAL. Whinge, whinge, whinge…..I know. it could be worse….

This cat looks how I feel most of the time……………

I do have some good news. My CEA is down. Still not in the normal range – I’ll be on chemo unless and until I hit that range (0 – 10 mmg), but down to 35! Previously I was hovering around 100, so it seems the chemo is working. All this is worthwhile if I’m beating the Invader. Truly, I don’t think it would be happening without all the prayers. I can FEEL them and I cannot thank you all enough.

A post I did not want to write

No I’m fine. There will be another cancer update soon – no worries. This post is about the passing of my dad on June 1st. His name was Dale Frederick Keniston, he was 80 years old and his passing was peaceful. I’m so thankful to all those sending prayers and condolences, especially through Facebook. I have not responded – I’m still reading them, there are so many. Thank you thank you thank you.

You can read more about him and watch the graveside service we had for him here. https://youtu.be/f4KtGLjpkK8

Miss you Pops. Now you can play ball forever.

The Invader – #12

I’m thinking since all I do these days is talk about my health here on de blog, that maybe I need to change the name to just “Whingeing in Abalama-ding-dong”. I did recently start knitting again though. The neuropathy in my fingers has lessened a great deal and plus my sister-in-law Mary has been knitting huge amounts during these odd, current circumstances and I wanted to be more like Mary.  Just working on a sock so don’t get too excited. 🙂

I haven’t written in about a month because I had nothing to report except that I was really feeling bad. SUPERBAD. For 5 weeks it’s been really tough. Apparently, my liver is recovering because I’m feeling better. I mean like well enough to do some GARDENING.

 

 

 

Now the garden has been neglected for over a year; I lost my garden mojo in 2018 and then cancer. Leaving your yard and/or garden alone in Alabama is not wise because stuff grows like they all taking steroids and it’s a big competition to be huge. I don’t just have weeds – I have TREES. Studmuffin and the Duke of Curl have been very helpful. But I digress – y’all really wanna hear about cancer.

At the end of April, 2 things happened: 1 – was another PET scan and 2 – I re-started chemotherapy. The PET scan was to see what all the changes were in my liver after all the stuff they’ve done to it.

GOOD NEWS! The scan showed no metabolic activity in any of the lesion sites. THAT MEANS THEY DEAD. Yay!

 

 

All the pain, nausea and vomiting was worth it to kill the cancer.

 

So why would the chemo re-start? I’m glad you asked. There’s a marker in my blood (well, yours too. In everyone’s blood really) called CEA – I’ve talked about it before. Anyway, CEA isn’t reliable for all cancers, but it is for the type I have. My CEA is the lowest it’s been since my diagnosis, but it’s still not in the normal range. My oncologist said that so long as my CEA is elevated, I will be on some kind of chemo. I’ve started with pills and next week, they’ll add an IV infusion of another drug. Fun, fun fun I tell you (no it isn’t but why be a downer?). Perhaps I’ll keep my hair, perhaps not. Life is good, unpredictable and spicy.

So other than dr. visits, garden center plant-buying excursions and trips to the pharmacy, I’ve pretty much been home for 2 months. All I can say is thank you Lord for the Internet.  Well I thank Him for everything to be honest, but I think this quarantine thing would be far more miserable for me. Hope you and yours are doing well. And for heaven’s sake – put on yer big girl panties and WEAR A MASK.

 

 

Thanks eleventy billion times over for all the prayers everyone. It means everything to me. Til next time…..

The Invader – #11

Hey everybody! How y’all doin’? It’s been a minute and some things are happening so I guess it’s time for another health update from me.

Because of the spread of the corona virus, I have been staying at home almost all the time – only out for doctor visits, walking the dogs and the occasional joyride in the car wearing my mask of course. The radio station has been automated for several weeks now so I cannot do my radio show either – I’m definitely missing that. I had a conversation with Studmuffin yesterday about just how long I’m prepared to stay at home. This discussion was difficult to have because he & I have been reading different things from different sources and I think also because he’s never been seriously ill. Please don’t get me wrong – he has been an absolute solid rock of support to me during this whole cancer thing! I do tend to minimize my discomfort to him, for why tell him? He cannot do anything to help and it will only distress him. So he doesn’t know just how bad I have been feeling and that’s OK I think. But as far as Covid-19 goes, he’s a lot less concerned about it than I am. Not only am I a Stage-4 cancer patient undergoing serious treatment but I am a diabetic as well. If I get the virus, it is likely – even with excellent health care – to be fatal for me. He doesn’t think so – he thinks I’m “tougher” than that, whatever that means.

I may be a tough cookie…but even cookies crumble!

Unlike me, he has not read the first hand accounts of those who have had the virus, or from front-line doctors and nurses as to how bad it really is.  Just by personal inclination, I have a greater interest in biology, life sciences and medicine than he does; yup, I’m a nerd who reads medical journals for FUN. Over the years, including the various medical problems I’ve had personally, I’ve acquired  perhaps a patchy but still somewhat greater understanding about immunology than he’s got, and I can point him in the direction of good information, but in my experience he won’t read any of it; he’s just not that interested. Fortunately, he’s not so far gone as to be advocating the cure of drinking bleach or Lysol! In short, I will be staying home and away from others most likely until there is a far greater understanding of this virus’s infection vectors and quite possibly until there’s a good vaccine.

Overall, life is pretty good because it’s spring.  Plenty of blooming things and pollen and birds and such. That always gives me a boost. I’ve really needed it because I’ve had a LOT of physical reaction to the liver microwaving and radiation treatment – pain, nausea and fatigue; basically the usual but it has been particularly intense since the microwaving. Generally speaking, I often have an unusual, personal reaction to drugs and procedures that the vast majority of people do not. Turns out, one of my aunts is the same way so I’m not even special! 🙂 So the duration of the nausea and pain is somewhat idiosyncratic but still on the outer edge of the range of normal.

Sick as a….frog

A bit of good news in that the “marker” in my blood which can indicate the presence or growth of “my kind” of cancer dropped significantly after the microwaving. The marker value isn’t yet close to the normal range, but it is the lowest since I got my cancer diagnosis so that’s all good.

On Thursday, I’ll be having another PET scan and starting a new round of chemotherapy. The PET scan will help us see more clearly all the changes in my liver and the lesions there, and the chemo will be of the pills only kind, so it won’t be as difficult to go through and I probably won’t lose my hair again – surprising how important that is to me even now.

If you have a spare prayer around, please send it in the way of my dad. He’s had pneumonia and some serious heart problems (not covid-19 thank God); he’s back in ICU for the second time in 2 weeks and he hates hospitals and I hope not only that he gets better but that he gets to go home much better than he is now. I’m trying not to worry about him or my mother.

Lastly, I can never tell you – because the words don’t exist! – just how grateful I am for all of the comments and prayers and support that all y’all have given me. It means EVERYTHING. My heart overflows with love and gratitude to each one of you.

The Invader – #10

How is everyone? I hope you’re being very, very careful with yourselves, sanitizing everything and washing your hands a LOT! I know I am. I doubt my bathroom has been this clean since we moved in here! I am doing my best to fill my days with laughter, joy and South Korean boy bands (it’s way fun – the music is great and can they DANCE! #BTS ).

 

 

I pray that you can find those things too.

Since I’ve had the Y90 treatment I told you about last time, there’s been a fair amount of pain over the last month, coupled with fatigue and nausea. I have good days…..and less-good days. My body doesn’t seem to like direct application of radioactive material – always makes me feel like I’ve got the flu for at least a week and a half. Studmuffin keeps saying that I should call the docs, but everything I’ve been experiencing is what I was told to expect – I guess the husband wasn’t paying enough attention or something. 🙂 On the less good days, I feel like ABC gum (if you don’t know what that is, ask an 8 year old), and it’s very difficult to get out of bed and function at all normally sometimes. On the good days, I’ve even been doing some work in my long-neglected garden. Heck I have snap peas and parsley growing right now. So it’s a mixed bag.

 

How I hope my liver will be after all the treatments….

Now that there is a pandemic of the corona virus, most all of my doctor’s appointments have been canceled and in lieu of in-person visits, the docs and I speak on the phone. I say it feels a little weird, but I’m grateful that it is possible. Because of my weirdo reaction to radioactive agents coupled with ongoing hormonal hot flashes and the arrival of clouds of spring pollen, I wonder daily if I’ve got “it”. Did that sneeze mean anything? Was that cough the beginning…? I take my temperature daily – so far so good.

Since I’ve been home like so many (including Studmuffin, who at this late date -very nearly the end of the beard trend – has decided to grow a beard ….I could write a whole post on that development *alone*….), I’ve been doing what I can to reach out to others. My friend Eric Dozier and his family had an online singing devotional 3 weeks ago on Instagram, and I enjoyed it so much, I decided to do one on Facebook on Tuesday nights. I’m so much more an audio – radio person, not so much a video person, but I am learning. It’s been fun and I have gotten really wonderful feedback from those that have seen it. I did them over Facebook live and then left the recordings on my FB timeline, so you can check ’em out if you’re interested.

I do have just a little bit more hair than this now….

I won’t be doing a Facebook live devotional this week because Tuesday (tomorrow) I go in for laser ablation to my liver, or as Dr. FirstName calls it : “microwaving the liver”. This will treat the cancer lesions in the “pointy” end of my liver, which up to now have only been addressed generally and not specifically. Then we wait a few weeks/months and see what we see. Dr. FirstName said I could probably wait a month to microwave my liver but that there’s no guarantee that the local hospital systems will be able to handle anything but the expected surge in Covid-19 victims. As it is right now, all elective surgeries and procedures are not permitted at this time, but as this is cancer treatment, I can still get it done.

I wish that the apparatus they’re gonna use on me looked like this, but alas, it does NOT. :::sigh::::

Friends, I cannot even begin to thank you all for the prayers and support all y’all have shown me. It means EVERYTHING to me. THANK YOU!

 

The Invader – #9

Just another update on the ever-changing landscape of my cancer treatment! Sorry I didn’t get to share any knitting; right now my knitting game is PATHETIC…..

This is Kristine the cancer cell. Apparently there’s a whole series of cartoons about her. Perhaps it’s in bad taste, but you know I laughed at this!

So tomorrow I go in to have radioactive pellets placed in a few of the artieries in my liver. This treatment is called Y90 – there’s loads of info on the Web about it and much of it is accurate so I won’t tell all about it. This is the first of two Y90 treatments – I’ll have another one in about a month. Why two – well I think if they gave me all of the pellets at once I might die of it, so they’re doing 2 treatments. I’m fine with that. This will essentially kill off about a third of my liver.

Perhaps I’ll glow in the dark……
(That’s a joke folks. I won’t be glowing inthe dark.)

Then in another month after the second treatment, something else will happen: perhaps another round of chemotherapy, or it may be an ablation (laser burn off of cancerous lesions) on the other end of my liver that isn’t receiving the Y90, or it may removing more of my liver from the Y90 side.  Or it may be a liver transplant. So, you may be wondering, why is this all up in the air?

It’s a balancing act….

Essentially, we – me, Studmuffin and the oncology team- are making a decision to do a more aggressive treatment schedule in order for me to actually become cancer-free.  If we didn’t do anything other than a maintenance  kind of chemotherapy at this point, the oncology team’s best guess is that I’d live 3 or 4 more years.  But since I’m relatively young and have responded unusually well to the treatment thus far, we’re gambling on the more aggressive treatment. This is NOT a sure thing by any stretch of the imagination; I don’t have even a guess as to how likely it is that I will become cancer-free. All anyone can say is that I have a chance….and we’re taking that route.   So at every point along the way, the team has to reassess what’s working or what isn’t and then make the next decision about what to throw at the Invader in hopes of killing it completely. That’s why there’s not a predictable schedule to follow.

This does make it a challenge to plan my immediate future, and I’m also trying to plan for what happens if the treatments don’t work as we hope, so that if I do die sooner rather than much, much later, my family will not have to make lots of decisions that I could’ve have made. I don’t want to leave a heavy burden for my family if I can avoid it. Kind of like “hoping for the best; expecting the worst.”

Did I mention that all of this is EXPENSIVE?!?!?!  I mean we’re OK but I can easily see how medical expenses are the number one reason that private citizens in the US declare bankruptcy….

 

Thanks a MILLION BILLION SKADILLION times for all the prayers.  It means EVERYTHING.

 

The Invader – #8

So last time I was telling you that I’d know more about my upcoming cancer treatment by the third week of January – turns out, nope I didn’t learn any more! I think some communicative wires got crossed; Murphy’s Law seems to be involved.

Studmuffin was traveling when I had my December date with the oncologist, so he wasn’t there to help me remember stuff and to ask good questions that I never think to ask, so it’s very possible I could have forgotten what the oncologist told me to do next, or perhaps the oncologist didn’t communicate the next step to me/what I was supposed to do. Apparently after the scans I had in early December, I was supposed to go see an Interventional Radiologist and I didn’t. Plus, I had a touch of the flu on the day of my appointment, so we made a date for a week later, with the possibility of my starting a new round of chemotherapy on that appointed day.

Friends, I won’t lie – as the date drew nearer, I became quite terrified. It’s one thing to know about chemotherapy intellectually; having lived through it and to know what’s gonna happen is a whole ‘nother thing. You see, they have to 2/3 kill you to get the cancer to die and I felt really awful for months. To voluntarily say OK to doing it again…… well, I was DAUNTED. I think I was even hiding how anxious I was from myself, because on that next appointment when I didn’t start chemo again, I immediately went home and slept for 4 hours and the whole next day I was kind of a limp noodle – with relief.

We did go see the Interventional Radiologist. This fella is an M.D. to be sure – I didn’t know if Interventional Radiologists were docs or not – and he seems very competent and caring. Nice man but……I think he’s younger than my oldest offspring is plus he didn’t introduce himself as Dr. Soandso, he said, “Hello. I’m ‘Trevor’.” No, Trevor is not his real first name, I don’t think it’s fair for me to use it here, but it’s one of those more recently popular names for men like Dylan, Lucas or Ryan. It’s weirded me out a little. I’ll call him Dr. Firstname here on de blog.

He didn’t look *quite* this young……I’m getting old I know!

 

My hair is growing back, thinner and more grey than before but I’m looking forward to having it back because my head gets cold. Of course if I have more chemotherapy it will all fall out again. I’ve been intermittently trying to find a wig that doesn’t inspire immediate gales of laughter….with no success. I’d post pictures for your amusement, but it turns out that I’m a bit vain about my hair and so haven’t been able to bring myself to do it. I wish I could – somebody oughta be laughing. Y’all certainly deserve something for wading through all my complaints! I’ve just sent off for 2 more wigs so we’ll see. Maybe I’ll post some pictures……

Wish I had the guts to wear this as an everyday wig…..

And as far as knitting goes, I’m not doing a whole lot of it. I have some neuropathy in my hands from the chemo that makes it uncomfortable to use my fingers. I was warned of this side effect and it doesn’t bother me too much, but it does s-l-o-w-d-o-w-n my knitting terribly. I’ll try to put up something here about knitting in the next few weeks.

Anyway, what’s next is that later this week, I get to go to the hospital, go under general anesthesia ( for the fourth time in eight months!), and Dr. Firstname is gonna run a scope up from my femoral artery in the groin up to the blocky end of my liver and see what’s what. This is in preparation for implanting several packets of radioactive beads – a treatment known as Y90 – that will kill off not only cancer but about a third of my liver. I already know that radiation makes me ill, so I’m not looking forward to this experience. By the way, did I mention that this is the most expensive test yet? Even with really good health insurance, our out-of-pocket costs are in the thousands for this one. Yes, I’m whingeing aplenty today, but friends, please know that I WANT TO LIVE to whinge another day so don’t take it so seriously. 😊

As for future treatments, there’s other things being mentioned: more chemotherapy, liver surgery or even a liver transplant. All is up in the air. I know that, generally speaking, the news about my cancer went from awful to pretty good last year and so a few people have been confused about what it all means. I’ll try to be clear. I have cancer. It has not gone away; I have not been cured. BUT I have responded far, far better than the docs had hoped to chemotherapy – I’m MUCH healthier than I properly should be at this point. I really attribute this to everyone’s prayers and the skill of my medical team. Make no mistake – this cancer will probably kill me – none of the docs have given me an estimate, but my guess is that there’s 90% or more chance that it’s gonna do me in. When that will happen is really an unknown and un-guessable at this point. Makes it a little challenging to plan anything but oh well. Perhaps the best way to look at it it that the docs have an array of tools/treaments/therapies and one by one as circumstances demand, they are using them.

Thanks so much for your kind attention and prayers. It means everything to me. And I simply adore it when you leave comments. Bye for now.

The Invader – #7

First off – Happy New Year!

In the depths of winter, I find New Year’s celebrations and the making of resolutions to be very hopeful things, and I like whatever will promote hopeful things!

Just a quick update on my health – in the first 2 weeks of December ’19, I had the 2 scans that the docs wanted to see. However, I won’t see my oncologist til about the 20th of January so I won’t know about future steps to take (chemotherapy, surgery, radiation) til then at the soonest. I figure if things had gone badly, they would’ve called to make a sooner appointment! No news is good news as they say. But also at my last appt. with my oncologist he told me that he really thought that I would be having the liver surgery and ablation in the near future, but the scans would tell us for sure. So I am preparing myself mentally for serious surgery again, though I have no date or timeline for it at the moment.

“T’inquiete” essentially means “Don’t worry”

Overall, I’m feeling a bit better everyday. The fatigue is far less as the chemo drugs s-l-o-w-l-y leave my system. My appetite has returned – just in time to be surrounded by holiday temptations and feasting of course. Because of all the nausea and chemo, I’ve lost about 65 lbs., which is almost 5 stone for the Brits and nearly 29.5 kg for the rest of the world.

Back in 1987, when I had two separate jaw surgeries (TMJ problems) and had my jaws wired shut for weeks after each one, I was convinced that *that* was the worst way ever to lose weight**. Nope, chemo is a much worse way to lose weight than that. But now that the weight is gone, it’s gonna take new habits to keep it gone and to hopefully and sensibly and healthily to lose more weight as I still have plenty to lose. FYI – I probably won’t be talking any more about my weight loss here; our cultural obsession with how much we weigh and in particular how much women weigh and should weigh…..let’s just say I have ISSUES!

I spent New Year’s Day walking (almost hiking if I’m honest) with Studmuffin & the dogs in the morning. Then cooking a bunch (mostly spaghetti and meatballs, but there was also a chicken dish and other things) all while watching the Doctor Who marathon on BBC America (actually been watching the marathon for days now- love love love it since I was little), and working on a 1000 piece puzzle with the hubs – which we finished. I put up the new calendars too. It was a good day, especially since I didn’t have to do all the dishes. 🙂 What did you do?

My hope for everyone in 2020 is for all of us to practice much greater kindness to one another- individually and collectively. I notice that there is a tremendous “kindness deficit” in the world today, and that the fearmongering going on is very LOUD. Kindness is so often quiet it can be easy for us to miss, and I think there’s a tendency to dismiss its importance because it is quiet. Which is kind of NUTS because it takes strength to be kind, to be gentle. Any idiot can bellow loudly/indiscriminately about how terrible everything is and how much worse it’s gonna be…..WATCH OUT! WATCH OUT! WATCH OUT!

And then too, thoughts of fear often chase away thoughts of kindness… Here’s to a much kinder year!

That’s all for now. 🙂

---

**Also back in 1987, when my jaws were wired shut, absolutely every girl or woman that was aware of my surgeries (with the notable exception of my own dear mother) commented on how having one’s jaws wired shut was *such* a good way to lose weight. This was in rural New England where people are very reserved and are far less likely, in my experience, to make personal remarks of this kind. I found these comments terribly sad, depressing and kind of disgusting because it was every single one of us. I realized then how brainwashed we females all are on this topic. It’s tragic.

The surgeries were necessary and I’ve benefited ever since from the results, but just in case you’re thinking that having your jaws wired shut to lose weight is a great idea, my total weight loss from 7.5 weeks of my jaws wired shut was 13 lbs. If I had had my jaws wired shut for weight loss I would’ve been sorely disappointed with that result. Just sayin’.

The Invader – #6

PART ONE

So I have completed chemotherapy as of mid-October. Hooray!

I have to say that last round really took it out of me! It has taken me a month to start feeling half-way normal – but I’m not really complaining. I’m still not myself but each day is a little better. I’m hoping my hair will grow back soon, but in the meantime I’m looking for a wig. It’s harder than you think….

What most wigs look like on me

What my oncologist was aiming for with my treatment was to get me to a point where I could have liver surgery and ablation. To back it up a bit, all of the colon cancer was removed during the colon resection last May, but the cancer had spread (metastasized) to my liver. As of July, I was borderline on the criteria for liver surgery and ablation – I might be able to have the surgery or I might not. The chemo was designed to keep me eligible for liver surgery and/or ablation once chemo was done. More specifically, the scans (both CT and PET) showed 3 large lesions in the left lobe of my liver and and another possible lesion in the right lobe (the pointier one) of my liver. My oncologist told me that the option of surgery was only possible after this first scheme of chemotherapy; generally the liver would be too damaged after subsequent rounds of chemo for it to heal and regenerate after surgery.

Doesn’t everyone want a happy liver?

Now if the liver lesions I had were all located in one lobe of the liver, they probably would have removed that lobe and called it done, but since I had lesions in both lobes, a combination of surgery and ablation would be done. I may not have this bit right, but my understanding was that the surgeon would remove the larger lesions surgically from 1 lobe and the special oncology radiologist would use a laser to burn out the lesion on the other lobe -that’s the ablation part. This is very serious surgery. I was gonna be in the hospital for at least 10 days post-op (the longest hospital stay I’ve ever had) and the recovery period for my liver was gonna take a number of months.  I learned shortly after the Invader #5 update that I was still doing well enough to have the surgery (above the cutoff line – yay!) AND that if the surgery was successful, I would have a 30 – 50% of being CANCER-FREE!!!! What terrific news!  The only reason I didn’t immediately post about it here was that i did not have a date for the surgery; I only knew that we were aiming for late November.

My fantasy is that laser ablation would be joyous and fun like a laser light show……

PART TWO

So last week we met with the surgeon again (lovely guy he is, as is my oncologist) to discuss the surgery and set up the date. When he came into the examination room, the first thing he said was that my scans looked REALLY good. We’d already had some indications that I had responded quite well to the chemo; a couple months ago the oncologist had seen no new lesions and some of the old ones had shrunk- all good news. As of my most recent PET scan, the surgeon told me that they could no longer see the lesions….so NO LIVER SURGERY FOR NOW.  This is fantastic news!!!

He showed us the most recent scans, contrasted with the older scans and it’s a miracle. You can see some scarring of the liver where the lesions were but no lesions.  He said that it doesn’t mean that there are no cancer cells left in my liver, we cannot say I am cancer-free, but that we will take a wait-and-see approach.

I will have another scan in mid- to -late December to see if more needs to be done – if the lesions reappear, grow or new lesions show up. Depending on the results of that scan, I may need surgery, more chemo, radiation, perhaps some other therapy or maybe nothing else at all. Again, this is wonderful news. In one sense, I feel somewhat ambivalent about it because I was focused on having the surgery – surgery is something I have had a good bit of and I understand it fairly well I think. And it is something concrete with a before and an after, with some odds of being cancer-free to go along with it. The wait-and-see approach, as great news as it is and as happy as I am NOT to be having major surgery this month, is more vague and uncertain to me. I don’t have any odds or percentages at the moment and it’s harder for me to get my head around it. Still, it’s TERRIFIC news!

---

Back in July when I was told this was incurable cancer, I didn’t believe it. Over the months since, the news has gotten better and better, and I believe with all my heart it is all the good energy and the thousands of prayers that so so many of you have sent my way. I am SO GRATEFUL.

Thank you fifty skadillion times over.

It means EVERYTHING to me.

I’ll keep you posted.

Happy Thanksgiving.

The Invader – #5

Since last I told my cancer story, the news has been cautiously good. Sorry for making everyone wait so long for this most recent update – I’ve been caught up with a bunch of things and frankly, since working on my book (7 years now – gotta get serious and fininsh this thing!) I’ve fallen out of the habit of carving out writing time to do a post here and there.

I hope you know, and I’m telling you now, the comments I receive about the blog are deeply encouraging and I am so grateful. It really helps me to find the time to write. I usually have the posts all in my head – I’m just lazy about the typing. If I ever get speech-to-text for my ‘puter, well just WATCH OUT! But back to the Invader.

Since last I wrote, my chemotherapy regime has changed to a more intense therapy and so the side effects have been a good deal more serious. 80% of my hair has fallen out – let me tell you the hair coming out in locks in the shower is a really tough moment. I bought a wig over the Internet – it was a bargain – and oh my was that a mistake – wrong color big time and the style well let’s just say it inspired laughter.

Did you know you can get stones in your salivary glands? I had no idea….until I got one. So I’m already kind of a zombie because it was chemo week and Friday afternoon, while having yet another expensive scan (with radioactive dye which makes me sick every time – did I mention that they are hella expensive?) I got that twinge one gets when one’s salivary glands are gonna swell – like with a cold. I didn’t think much of it til later. By 8:30 that evening, I was in serious pain, even after taking painkillers, so we went to the ER. After hours & hours of waiting (whilst whatever pain killers I had taken wore off) I finally got in to see a dr. They gave me a pain shot which eased it for just a couple of hours, and another CT scan with radioactive resist – my second in less thatn 12 hrs (different parts of the body were scanned each time) and I learned that 1) I had a stone or some blockage of the left side parotid salivary gland (I was unfamiliar with this gland – it’s sort of kidney shaped and kind of wraps around your ear) and 2) the treatment consists of warm moist compresses, massage and chewing lemons and sour candy. The idea behind the lemons and sour candy is to get the gland to produce more saliva to flush out the blockage. And they gave me a prescription for some narcotic pain meds and a course of antibiotics.

I knew I’d be seeing my oncologist on that next Monday, so I tried to follow the instructions….but the pain was SO INTENSE. We called the after hours number for the oncologist to let him know what was happening and Studmuffin spoke to the nurse – she said I could take a double dose of the pain med – THANK GOD. Finally the pain was bearable. Meanwhile my face was swelling more and more – I was producing lots of saliva but it was backing up as the duct was still blocked The swelling was interfering with not only chewing but my breathing. I was sleeping sitting up on the couch so I could keep breathing!

My oncologist upon seeing me postponed my chemo treatment for that week and immediately whipped out his phone and called an ENT friend of his – got me in to see him THAT afternoon; a near impossible feat. I *love* my oncologist for doing that. Anyway, got into the ENT dr. and he affirmed the diagnosis and almost immediately put on gloves and got his hands in my mouth (in my experience as a kid, some ENT’s are quite reluctant to be hands on) to massage and see what was happening. That was very helpful to me because it showed me how much pressure I should be applying (hint: it was a lot more than I had been doing). He essentially told me to keep doing what I was doing, gave me another prescription for the pain meds and to come see him in 5 days. I admit that I cried right there in his office because I felt so hopeless at that point. I felt so awful and this was all the treatment they could offer in 2019? And the pain….

Well let’s talk about pain. I’m not a pain weenie. Every surgery I’ve had, except the colon resection last May, I wound up not taking all the pain meds I was prescribed, because I don’t like taking narcotics unless I absolutely have to and I can bear a fair amount of pain – the crusty New Englander part of me feels the need to point this out. 🙂 Anyway, I have saved those leftover medications over the years and they have come in handy on several occasions – earaches, somebody throws their back out, that kind of thing. I am always very, very, very careful with dosages; these medicines are serious business. When I started taking double the pain meds to make the pain bearable, well I was running out and I am very thankful that I still had a few tablets left from my heart surgery 10 years earlier (FYI – tablets are very, very stable over decades if kept in a reasonable environment (not too hot or cold and low humidity). Don’t get me wrong, I don’t have any kind of “stash” at all, just a very few tablets left over here and there. This helped me get through. Truly, this has been one of the most painful things I have EVER experienced – and I’ve had heart sugery and given birth 3 times!

So just as I am taking the antibiotic (a pill so big I have to split it into quarters to swallow it) I develop a yeast infection as well. This is TMI I am certain, but I feel I wanna say it because it only added to the over all misery. I had this as well as “elimination follies”* and I was not at all interested in eating; in fact I ate nothing for 3 days at one point. I did, because of a great sacrifice on my husband’s part, get to go to the Affrolachian On-Time Gathering, which was probably the best medicine I could have had. The gathering deserves its own post but I don’t have the energy to do that right now. Just know that all y’all oughta be going next year!

Eventually I was sent to Birmingham to see another ENT who has a nifty scope for this gland – the Duke of Curl had to drive me down and back, and the doc was running WAY late (2.5 hrs late) so none of that was fun. He told me that I was too swollen to scope and that I should take about 2 weeks more antibiotics to clear this thing out. He did not see evidence of what I have been calling my “face rock” so presumably it has passed. I can breathe normally, sleep in my bed and chew normally again, too. I am off narcotics and am not taking anything other than Ibuprofen for pain and inflammation.

This is the really gross part so you might wanna skip this paragraph. I started having some swelling go down and some relief after my first ENT visit and the much stronger massage. The most painful area, and the most swollen, is just in front of and just behind the ear. So the day after I finish the 7 day course of antibiotics I got from the ER doc, I’m massaging behind my ear and the skin ruptures and all this bloody pus comes draining out. I had actually given a good deal of thought into opening that area up myself with a large, sterile needle, but I’m just as happy not to have to do that and that it occurred naturally. It is still draining (almost 2 weeks now) and the B’ham ENT cultured the pus and has as of yesterday given me a new antibiotic to take (very large pills that cannot be split and are quite challenging for me to swallow).

Last week was chemo and it hit me wicked hard. When I can sleep, I have lots of vivid nightmares (my therapist calls them “poison dreams”) and I am much, much weaker than I have been – so weak that I have been afraid to drive myself places. I’m tryna take a trip to NH to see family in a week – it’s a little iffy that I can even go. Still I am feeling better today than in the last 3 weeks.

It’s been six months since my diagnosis so I guess I’m officially down to 18 months life expectancy – that’s not what I say it is and of course God has the final say in all cases. I thank you from the bottom of my soul for all the prayers and I hope you’ll keep on praying for me; the prayers are keeping me going. Next up will be the big liver ablation in November, if I’m well enough to do it. I’ll try to write more frequently and briefly in the future.

Interlude Pt. 2

So to tell more about my vacation – before it slides from my memory…..

So I don’t have that many more photos that I took; I’ll share some that others took…..

One of the things I have wanted to start here in Aba-lama-ding-dong for more than 10 years is a community sing. I’ve read everything I could get my hands on about them but had never attended one, so my lack of experience has been my stumbling block for all this time! I have been to Gospel Sings before, but I knew it would be somewhat different doing a community sing…. So I found one at the Central Pennsylvania Arts Fest that I could go to. It was held at a downtown Presbyterian Church.

Until about 5 minutes before it started, I was the youngest person in there by at least 10 years (except for the sound guy – he looked to be about 20). 2 families came in just before we started with grandparents, parents and grandkids, so a broader range of age was present. I think when it began there were maybe 70 people there. They handed out a booklet of song lyrics, which I later kept as a souvenir though we were asked to turn them in (I’m so rotten I know). Note to self – Beatles songs can be quite difficult to do well in a community sing. There were a couple of hymns sung as well and the fella leading it was quite witty throughout. I’m stealing all his best lines by the way….

I enjoyed it – though I was reminded again that I was up North – almost no one spoke to me or made eye contact, and there were zero people of color in this space. In fact as a group, we sang the very whitest version of “Wade in the Water” I have ever witnessed…… but it was good to take part. Now I feel very sheepish in waiting SO long to start a community sing here – I have all the skills to do it and I have some ideas about involving other good songleaders I know here. Singing is a wonderful way of bringing people together!

As it was Wednesday, the Arts Fest really wasn’t together or in full swing as yet but that was OK by us; we ended up meeting a couple of wonderful folks – 1 in a shop, another taking surveys on the street that we had really good conversations with. Yup, even Studmuffin was talking to folks. 🙂 That night, we stayed at an Airbnb that is usually a Girl Scout camp. Absolutely lovely location and very rustic but we were fine with that too. Could hear the bullfrogs all night long….kind of a balm to my soul really.

The next day we went to visit a family just over the PA/NY border who used to live down here. They moved away about 7 years ago and I was determined to visit them as …well, tomorrow is promised to no one and truly we were within an hour’s drive. We had a splendid visit – we went to lunch at this place that raises turkeys and makes maple syrup (which I bought some for my folks at the gift shop. Yup, Helen almost always finds the gift shop – but I love to give gifts!). So good to spend time with them – and completely forgot to take any pictures of us together. Here ‘s a picture of the restaurant we went to – food was great!

Also, I got a new guitar – a Martin Backpacker. I brought another full size guitar with me, but I knew that I would not be up to carrying it around at Augusta this year, so I got one of these – they weigh less than 5 lbs.

I got this out at our friends’ house and we did a little singing together. So good to see old friends! The guitar is an unusual shape and combined with my own shape, I had trouble playing it and making it sound good. It’s clumsy to use, though I’ve just seen an add-on thing that I might get which would make it better……… But it’s useful and I’m happy to have it. I played it as much as I could during our week’s vacation before Augusta as I knew my calluses on my fingertips were really weak.

We stayed at another lovely Airbnb in Erie PA and met the delightful fella who was the host and his dogs. I so enjoy meeting the hosts. There is such loving care put into the hospitality – it’s a spiritual thing for me. Studmuffin has also come to like it a good bit, though he’s a confirmed hotel rat. He likes the anonymity and the bland decor and not having to talk to new people at hotels. He wouldn’t do Airbnb without me along, but when I’m there to carry the conversation, he rubs along nicely. The hosts in Erie had left a bag of grapes in the fridge for us that were perfectly ripe and delicious – so very thoughtful and we ate every one of those grapes and went to bed early.

It was at this point that I think we went to Falling Water – on our way back to Pittsburgh and then Elkins. I had bought our tickets online because there is no air conditioning in Falling Water and I wanted us to go through the tour before it got really hot outside. It was a good strategy and I really enjoyed the tour. We had a wonderful guide and it was his birthday I found out, so I sang to him later at the end of the tour. Seeing these FLW houses and FLW-inspired houses has really made me want to refurbish all of my flowerbeds this fall – God willing I’ll have the energy- and to get rid of a whole lot of stuff we have. Again energy may be a problem here, and I truly loathe having to sort through our possessions in this way. It’s one of my least favorite activities, but we have lived in our little house for 21 years and the accumulation of stuff over that time period is a bit overwhelming. Our house is just under 1000 square ft, 3 bedrooms and our main bathroom is tiny (2 people can fit if one stands in the tub….). Now that we have only 1 of our progeny living with us, you’d think that I’d be using that other room wisely……alas but no. The comedian Phyllis Diller is my “Spirit animal” and I follow something she said:

“Housework won’t kill you. But why take the chance?”

We stayed at a truly outstanding Airbnb for our last night in PA – it’s called Schnoodleberry Farm and the hosts were fantastic. Really it’s a destination in itself and we were sad that we had so little time there. We hit it off so well that I’m scheming as to how I could maybe stay there again next summer (if I’m healthy enough…).

Yes, they have peacocks, and turkeys, and chickens that like to listen to Prince, and emus…. Amazing place!

So then, Studmuffin had to travel for work the whole next week, so he flew out of Pittsburgh to Southern California. He loves his work deeply, so this was wonderful that the timing all worked out. After dropping him at the airport, I headed back down to Elkins, back to my mother-in-love’s house and time to start Blues & Swing week at Augusta!

So what is Augusta? Augusta is what the Elkins area used be called before it was Elkins. Back in the early 70’s folks were noticing that the old ways of the country people were dying out, so they started the Augusta Festival to celebrate these ways and then started doing classes. Things like weaving and blacksmithing and making pottery and old-time music with dulcimers and dancing and so on. It takes place on the very hilly campus of Davis & Elkins College. I got involved a little over 20 years ago because I was having a fairly difficult pregnancy and we knew we would be in Elkins to visit his parents and grandmother in August and have them meet the baby who would be about 3 months old at that time. Studmuffin insisted that I go to Augusta for Vocal Week – he possibly may regret his insistance ….. Anyway, I went and really learned some things and stayed up late, late, late jamming with others and took a gospel singing class that changed my life permanently. The community that is built for the week at Augusta is equally important as the classes you take. It can be hard for first-timers to make their way in – it can seem like everyone already knows each other though that isn’t really true. I always try to seek out the new ones and encourage them to keep on introducing themselves and hanging out.

So I met up with friends from years before and I have a particular affinity for the dance troupe that comes (Urban Artistry). I cannot dance the way I used to (too many joint issues) but I can still dance some, and the dancers know I love them! Here I am with Russell and Mike – simply wonderful human beings and stone cold dancers!!!

This was at the outdoor concert that week. Wish I’d gotten a photo of Hubby Jenkins playing badminton….

Mike dancing just a few steps with me. My dream is to regenerate my joints to the point I could take a week of dance at Augusta. Unlikely to happen but I can dream can’t i?

Of course we gotta do the silly faces!

I took classes in guitar and voice. I think I can finally (after decades of no success) do an alternating thumb bass on the guitar. Course I haven’t practiced much since I got home. I also got some lessons on bones, gave away a pair and bought a new pair. Definitely gonna have to make time to practice the bones – they make such a satisfying clacking sound….

Augusta is good medicine for me and I didn’t stay out very late (for me) all week. I am very grateful that my oncologist encouraged me to take this time, this vacation. Studmuffin flew black to Pittsburgh on Friday and my sister-in-law was so good to go get him so I could stay at Augusta every last minute. I even wangled time to get a massage. All good!

Then we drove down to Roanoke to spend a little time with my parents. We had a little dinner party with friends we’ve had so long they are family now. Truly a beautiful time we had. I’m so grateful. So much music, nature, good food, laughter, conversation, meeting new folks….tremendous!

Then we went home. We were gone for nearly 3 weeks and it’s great to go, but great to come home and sleep in our own bed and of course see the doggies and cats.

Hope we can go and do something like this again.

Interlude – Reunion, Road trip, FLW & Augusta

So when last I wrote, I was telling you all the horrible news, just before taking off on my wonderful 3 week vacation. Instead of writing tons, I think I’ll do mostly pictures.

First let me say that I had my first chemotherapy treatment which made me WAY groggy for the first 4 days-just in time for the family reunion. There are few pictures that I took and all of them are blurry, so here goes:

Karaoke – Elizabeth singing; James’ legs. I sang “Midnight Train to Georgia” – I always do.

from L to R: the Force of Nature, the Duke of Curl, me, Studmuffin. Wish I could remember what I said to tease the FoN…..Please note that we are holding the frame upside down

So that’s about it for the reunion. It was fun…when I wasn’t sleeping.

The Duke of Curl has been getting into….wait for it….blacksmithing. Yup. He’s joined a local group and wants to get his own forge.

Duke of Curl in Action

Making hooks for Grandmother

So he decided to take a week of blacksmithing classes at Augusta – which originally was scheduled the same week as Blues week. However, when we got the final schedule, it had changed so that Blues week was the week after. Studmuffin thought that we should go ahead and drive the THIRTEEN HOURS back home to Silicon Holler and then, in another week, drive up to WV another THIRTEEN HOURS and then drive back home again THIRTEEN HOURS . Nope nopity nope nope, says I. I decide we are going on vacation in PA & NY state, visiting friends, family and tourist sites for that intervening week. Yes, there will be driving involved, but only in stretches of an hour or two and mostly not highways. I need green and lots of it.

So we visited Studmuffin’s brother and kids in PA as they weren’t at the Reunion. I hadn’t seen the kids in YEARS – we’re gonna make a much greater effort to see them more frequently. Studmuffin & his brother definitely need to see each other more often. I only took pics of the kids so I won’t be posting those. Coming soon – FLW!

Architect Frank Lloyd Wright

Before I go there, I read a book recently by Dr. Joan Vernikos called “Designed to Move” She’s retired now, but her whole career involved the biometrics of the human body as it relates to gravity – regular and space conditions. Basically, sitting so much is killing us, so stand up every half-hour. Even if you run 2 hours a day, if you sit for 6 hours, you’re still sedentary. I tried to implement this on our trip, though I changed the time period to 35 or 40 minutes. Fortunately Studmuffin went along with this gracefully. I think it helped me anyway, and we stopped at some very interesting places we wouldn’t have done otherwise. Pictures later.

So Studmuffin is a huge fan of Frank Lloyd Wright and over the years we have visited several houses and building he designed. Back when I was maybe 6 or 7, Mr Rogers visited Falling Water on his show and I have wanted to see it ever since. While on their website, I found this other place called Polymath Park. You can read all about it on the site – I made a reservation for lunch; all the other reservations were filled and that night we stayed overnight in the Balter House.

Designed and built by one of FLW’s apprentices – Balter summer house

Living room/great room. The skylight also is over the kitchen so one doesn’t have to turn on the light in the morning. The acoustics in here were just wonderful!

Time & money permitting, I would love to build a nearly exact replica of Balter House for us to live in. I Loved It!!

The food was very good. Studmuffin always wants to take photos of me in places – I dislike that so I have started doing “dead selfies” (see the backstory here – I think she’s hilarious), so here’s me in the lovely restaurant:

It was deadly but delicious….

Others in no particular order:

Previous lunch in WV

In Knoxville

Inside the Balter summer house

someplace in PA

My absolute favorite so far in the Blue Ridge Mountains.

We visited in our stops the Flight 93 crash site & memorial, and the Fred Rogers Center. Mr. Rogers was hugely important to me in case you did not know. They had a little museum and I took pictures:

Queen Sarah Saturday

King Friday

Prince Tuesday

Daniel Striped Tiger

Lady Elaine Fairchild

X the Owl – unfortunately my pic of Henrietta Pusycat didn’t come out. Meow me meow meow sorry meow.

Mr. Rogers taking a selfie…..

The famous trolley

Fred Rogers…a truly great man.

The 2 main FLW houses we went to were Graycliff on Lake Erie and Falling Water near Pittsburgh. Their websites have really good photos so I won’t take up space here with my poor attempts. I loved both houses and they are very different. I had not heard of Graycliff til a NY friend mentioned it and I am so glad we went to it. Not as celebrated as Falling Water but equally as interesting for me. I’ll share just 1 Graycliff photo – the flower arranging sink. So unusual!

You should go and visit these wonderful places…..

Falling Water surprised me in several ways – you could barely hear the water in most spaces, the overall scale of the house is small – it isn’t a grand space, there’s a freshwater swimming pool…… There’s so much to see..you really should go – though not if you have difficulty walking or climbing stairs….I got a sassafrass walking stick by joining their club and they have a simply MARVELOUS gift shop.

We stayed at several AirBNB places – all of which were wonderful in their own ways. Studmuffin let me choose whatever I wanted….once he realized we weren’t going to go visiting various battlefields and disaster sites (Johnstown Flood for instance). I told him I didn’t want to visit all the death-filled places on this trip.

I think I’m gonna have to write a part 2……..I hope by the end of the week.

The Invader – update #4

Sorry it has been so long! I have been traveling around with family and Studmuffin, and I won’t be back for another week as I’ll be back at the Augusta Heritage Festival for Blues & Swing week again this year. Not doing keys this time – voice and guitar….maybe even learn to play the bones…..

The Invader gazes upon his realm….soon to be taken from him, but he doesn’t know it yet.

So I began chemotherapy on July 2nd, when I also received my diagnosis and prognosis. I get an IV infusion every 3 weeks and the rest of the time pills – lots of them. And thank goodness! The drugs? They are really expensive! Yay! This course of chemotherapy is supposed to last 3 months, but more on that later.

The first 4 days after the IV infusion I’ve now learned that I am so groggy I am pretty much comatose/useless, which made me WAY fun at Studmuffin’s family reunion I can tell you. Studmuffin was fantastic about the whole thing I have to say. And for my own family members, yes, there’s now another thing that will stop me from talking – believe it or not! So now we have: 1) general anesthesia, 2) sleep or coma and 3) a 4 day long course of a particular anti-nausea medication. Seemingly nothing else will.

I rather think Studmuffin enjoyed the respite from the usually never-ending flow of words exiting my lips on our 13-hours-over-2-days drive to West Virginia from Aba-lama-ding-dong.

The rest of the time I am more fatigued than usual, and have been greatly disturbed in my own digestion, over and above the aftermath of the surgical colon resection I had in May. Let me just say that I now understand all those commercials I saw on tv as a kid where older folks were discussing “regularity”. What the heck was that – regularity? Why was it such a topic of interest? When I finally figured out what they were talking about, maybe age 10, I thought they were NUTS because you know, I’d never had that trouble before and how could *that* really even be a thing? Got it now, thanks. Experience is a real fine teacher!

So now here’s the diagnosis as a result of the recent PET scan – I have Stage 4 colon cancer that has metastasized to the liver. Remember my adorable liver? My sweet, untroubled by alcohol for decades liver? Turns out I have cancer throughout the liver – can’t just hack off a lobe of it either as the lesions are all the way through and all over the liver.

So what does that mean? This is kind of cancer is considered incurable…though the docs don’t like to say it. There are things that can and will be done to prolong my life depending on lots of different variables. Generally the estimate of life length is 2 years. I believe I have 4 years….but that’s a whole ‘nuther story.

There may be more surgery, more chemo – a lot depends on how I respond to treatment. What I hate about this whole thing is that I am yet again, 10 years after open heart surgery, a person who talks about their health all the time. Don’t get me wrong – I am glad to talk about it with all of my friends and family, answer questions- please don’t take this to mean that I don’t want all y’all to mention it freely or whatever, but my goodness – I learned years ago that talking about my health is very boring eventually. I may start carrying around a pre-printed FAQ page with me so people can read it and I won’t have to repeat it again.

I’m doing well I think. I absolutely know it’s because of the prayers. I am constantly lifted up in prayer by many folks I don’t even know and many who I’ve never met in person. I’m weepy with gratitutde at some point every day. Thank you!

Now let’s talk about something else for a bit, shall we? Thanks.

The Invader – Update #3

So when last I wrote, I hadn’t heard back about the MRI. Well now I have and the news is WEIRD and possibly bad. They found loads of lesions on my liver, but they cannot tell if they are cancerous without a needle biopsy. To do the needle biopsy – you’re never ever gonna believe this – they have to do ANOTHER TEST.  So it was a PET scan I had last week and yes – more radioactive contrast.  OH BOY MY FAVORITE!

 

So in the last 7 or 8 weeks, I’ve had 2 CT scans, an MRI and a PET scan, all with radioactive contrast and all of which has made me feel quite ill and has the added bonus of giving me about 12 years worth of regular radiation. There’s a certain amount of radiation you get from just living on the the planet every year, so I’ve now gotten 12 years’ worth. Hurrah.  My spirits are good but sometimes things that don’t usually hurt start hurting and the thought does cross my mind – is that a cancer pain?  Plus the radiation has made my saliva taste bad 24/7. No bueno.  All this before actual treatment (other than the surgery*.) Makes me a little nervous as to how bad the treatment might be……

So tomorrow – Tuesday, July 2nd is when I start chemotherapy.

PROS – treatment has begun, supposed to last 3 months only, no radiation treatment in the forecast, taking mostly pills and I’m not supposed to lose my hair.

CONS- the medicine is EXPENSIVE, pills everyday (my track record on taking pills daily or even on time is abysmal), plus I’ve been prescribed not 1 but 2 medications for nausea so that’s gonna suck, IV infusion every 3 weeks which takes 3 hours (which I’ll get to do tomorrow too), no firm diagnosis yet (means more tests) and so no prognosis yet, and based on last week’s PET scan results, ALL OF THIS COULD CHANGE.

After I get done with the IV infusion, I get an hour to find food (I am a diabetic so even if I feel super nauseous I still must eat) and then go over to the hospital for the pre-consult for the needle biopsy, which hopefully can be scheduled for after our trip.

YES I am travelling. I got back last night from a working weekend in Mississippi, then Wednesday, we leave for West Virginia and Studmuffin’s family reunion. Then a week of visiting family and friends as well as some sightseeing – Studmuffin LOVES LOVES LOVES Frank Lloyd Wright homes – we’re gonna *stay* in one overnight and I wanna see Fallingwater. Tomorrow’s promised to no one so I’m going to Pennsylvania and upstate New York so there. Studmuffin was looking at all the things he’d like to go see – battlegrounds and the site of the Johnstown Flood but I told him I just cannot do that. This time out I need nature, music, light and laughter, not disasters, grief and wars if I’m gonna beat The Invader.

Yes, he was cool.

After PA and NY I come back to Elkins for Blues & Swing week at Augusta and he flies to CA for work. I am determined to haul myself to Augusta, though today I decided not to take any Blues piano this year – I don’t wanna have to haul my keyboard around this time. So I’ll take pretty much all vocal stuff – or perhaps Ukelele. I have a pretty good one, they are compact and they are fun and easy to play. I won’t stay out nearly as late as usual or maybe even at all, but I want to do this for my mental and spiritual health. Then we head to Virginia to see my folks for a day before heading home. Of course I am gonna try to eat at as many restaurants that have been featured on “Diners, Drive-Ins & Dives” as I possibly can, and am booking some rather unusual AirBnb places to stay. There may be a couple of yarn or fabric shops in there too. Studmuffin said he wants me to choose and not ask him. OK – no problem!

Two of the progeny are going to the reunion and the Duke of Curl will take blacksmithing at Augusta the week we are swanning around the Alleghenies. I’m really happy about them coming – they weren’t at the last one- and I think it’s gonna be a good time. And I very much hope the Duke has a blast at Augusta! He started getting involved with blacksmithing last year and seems to really love it.

Since my diagnosis in late April I’ve had a few moments of deep anxiety, but very few – perhaps 3?  I absolutely know that this is because so many of you are praying for me. It’s truly a RIDICULOUS number of people – I need to do something pretty amazing to be worthy of it at all and I’ve got zero ideas of what it might be at this point. Maybe single-handedly fixing the broken US immigration process? Reverse climate change?  I don’t know. If I could I surely would….Thank you all very very very much.

If I have a few working brain cells left on the trip, I’ll try to take pictures and share….maybe even write an update, but I can promise nothing. Isn’t that nice of me?  Until next time…..

 

 

 

 

 

—————————————————

*By the way, I had the surgeon look at the incision that’s been bothering. Well, MORE than bothering, but the details are really quite disgusting and you really don’t wanna know. It took me 3 weeks to get in to see him. He glanced at it for perhaps a whole second and then said something I really didn’t appreciate. When I told my mother – she’s a retired nurse and wants to know all the gory details, plus she is rather fond of me – she exclaimed, “Surgeons!” in such a way that 1) made me laugh and 2) indicated a certain frustration borne of long experience with surgeons.   It’s been my experience that surgeons like to cut, not to stitch up, most of them are men and do not know much at all about sewing, and they’re not very interested in wound care. Don’t get it twisted – I like my surgeon, he did a really god job on me and I am very grateful, but this last bit was not as helpful as it might have been. I will continue to treat it as I have done which has made a big difference. I *still* can’t go to water aerobics yet, though (no open wounds in the pool, right?) and that irritates me no end.

The Invader – update #2

That’s what my mother calls cancer – the Invader. I wanted to title these updates something more interesting than “Health update” or “cancer watch 2019” or whatever. I like how Mom puts it.

Remember these guys? I do. Still, they are 2 cute to represent cancer….

So when I last wrote about my health, I was just telling y’all about my surgery and recovery. Still going fairly well….I’m having a little trouble with one of the incisions, it hasn’t healed quite right but that’s minor.  Even tho’ my oncologist has been on vacation for a couple of weeks, I was supposed to start chemotherapy almost 2 weeks ago. However, I got some unexpected bloodwork numbers; a number that was supposed to go way down after the surgery went way up – it almost doubled.  So the hunt for cancer elsewhere begins………..I had a CT scan a week ago Monday (that radioactive agent they give for the ‘contrast’ always makes me ill for about a week and a half; no, it isn’t an allergic reaction).

No felines were involved in my CT scan…

There’s some good news – almost everything looks perfectly normal. And then there’s some weird news: there’s something strange about my liver. It doesn’t look like a tumor there, it doesn’t look like the cancer has metastasized to the liver; it’s just unusual so YAY! I haven’t drunk alcohol in 30+ years and I quit smoking nearly 25 years ago – you’d think my liver would be in great shape! Now I wouldn’t say my liver is weird; I’d say that it’s quirky.

Quirky – like King Kong & Godzilla having a dance party…..

What does it all mean? More tests of course. Fortunately the tests at the moment aren’t invasive; unfortunately, the next one requires more radioactive contrast…….and we’ll learn more about my adorably quirky liver. I had an MRI last Wednesday – I was hoping that I might know something more by yesterday but no.

I know chemotherapy will begin soon – I’m hoping I can tolerate it well; there’s things I wanna DO this summer. I already told Studmuffin that if all the hair goes, I will be wearing wigs. but I know how this goes; I’ll get a wig hoping to look something like this:

But I *know* that I will end up looking much more like this:

 

-/-/-/-/-/-/-

Along with my title of the Invader, I’ve chosen my character/ logo/ drawing to represent my personal Invader. Why? Because he makes me smile. I admit I came very close to using Sheldon J. Plankton from SpongeBob Squarepants (below) – he makes me laugh; he’s so dramatic and nuts, but he’s only generally, hilariously evil. He’s not a true invader…..

 

So for those of you with kids or who are into animation, you’ll already know who this guy is. For those of you who don’t – his name is Invader Zim and I encourage you to check him out, especially if you enjoy dark humor…

Until next time, please wear your sunscreen and eat carrots and kale and drink plenty of fresh, clean water. The Invader doesn’t want you to, but I do. xxxooo

I have “it”; “it” doesn’t have me.

What is “it”?  Cancer, y’all. Tho’ really, I’m just not that upset about it.

It’s been TEN YEARS since I had heart surgery – I was so much sicker then and heart surgery is way more complicated than a colon resection. Probably the biggest thing is that my children are all ten years OLDER. This is huge for me.

Two things:

-first, I have been overwhelmed with all of the support I have gotten from friends, family, acquaintances and strangers from all over the world.  It occurs to me yet again that the English language really needs more words for gratitude other than “thank you”. I mean, I do not have words for how grateful I am – “thank you” – even a million times over – does not seem to really convey how I feel.

 

 

 

-second, the amount of well-intentioned advice on what I need to do to beat cancer that I have received has been nothing short of astonishing. I cannot begin to follow even a tenth of it.

 

About half of the advice that I have received contradicts the other half of the advice…..  I receive it all as expressions of love and caring, truly sincere efforts to assist me.  I am grateful.

Here’s the advice I *am* following:

“Whenever ye fall ill, refer to competent physicians.”

(Baha’u’llah, Kitab-I-Aqdas, Compilations, Lights of Guidance, p. 275)

I have really good doctors and I’m gonna do what they say. Sometimes my docs are surprised by this; apparently lots of people do NOT follow their doctor’s advice……

---

Just a few more particulars……

1. I had NO symptoms. NONE.
2. I turned 50 and was scheduled for my first routine colonoscopy in April. They found a cancerous tumor.
3. Please please please get your colonoscopy done. Do NOT put it off or think it’s not important. Of course it’s embarrassing. Of course you don’t wanna.  However, cancer is far more inconvenient (among many other things) and may deprive you of your life. It’s way more fun to tell your family the embarrassing tale of your colonoscopy than to have them plan your funeral.
4. I had surgery May 9. Along with part of my large intestine, 39 lymph nodes were removed and biopsied. 2 were found to have cancer cells in them.  My cancer is considered Stage 3a.
5. I will have chemotherapy – what kind is still being determined.
6. I am recovering well. The weirdest part is how confused my digestion is……..
7. It is quite possible that there is other cancer elsewhere in my body – the docs are starting the process of looking for it.  It also could be something else.
8. I haven’t knit on anything in a month.
9. I have zero gardening mojo. I never even *looked* at single seed catalog this winter. I feel bad for my new-ish next-door neighbor who is very tidy, but not so bad that I am doing anything at all to improve things. I may actually take some pictures b/c it’s so bad; I find it somewhat humorous actually…..
10. I have remained true-to-form as with all my other surgeries, in that as soon as I start feeling better, I do too much which sets me back days or weeks. I so want my stamina back. Right now, I feel pretty weak, in that I do something – like make the bed, and then have to take a nap to recover.                                                                                                                                                                       
11. I realize that my lifelong precociousness in various areas has continued into my middle age – I am an aging overachiever.

 

I hope to write more regularly; we’ll see. 🙂

So I guess enough time has passed now….and I’m so surprised.

So I watched this thing about Linda Ronstadt on YouTube on Tuesday. I always liked her music – no matter what she sang – and when her memoir came out and she was doing the rounds of TV interviews to publicize her book, she was asked again and again if she missed singing (she can no longer sing because of her Parkinson’s Disease).  She of course said she did, but in one interview she said that what she missed even more was being able to knit – again the Parkinson’s Disease. I remember seeing a picture of her knitting back in the day but I didn’t realize she was a real *fibertarian*!

This wasn’t the picture I remember but it doesn’t matter – there are several around. About 1975

Anyway, you know how it is on the YouTube – one video leads to another and there was an interview of her with the guy from the Old Grey Whistle Test I think from maybe 1975 or ’76 where she’s talking about how important the Troubadour (a bar & club in L.A.) was for the music scene she was a part of in southern California and I really enjoyed her interview – she was thoughtful, intelligent, down-to-earth and honest.  I especially liked how much she praised the ability of other musicians she met or heard at the Troubadour, several of which ended up in her backing band and then went on to become the Eagles.

The original 4 – l-r: Randy Meisner, Don Henley, Bernie Leadon, Glenn Frey

Folks who know me well have heard me say many, many unkind things about the Eagles throughout my life. You see, where I grew up, there were few radio stations, and there were several bands/musicians whose music was played so very often I got completely burnt out on them and their music: Led Zeppelin, Boz Scaggs, Creedence Clearwater Revival, AC/DC, Fleetwood Mac, ABBA, Eric Carmen/Raspberries, Benny Mardones (he’s a little different b/c he just had the one song – that really creepy tune about the girl being underage – I heard it on the muzak at the grocery within the last 6 months and yep, it’s still way creepy). I have always thought it strange that I never got burnt out on the Bee Gees……..

For most of the other artists I mentioned, I have been surprised to learn that with the passage of time and NOT hearing their tunes for years, occasionally it would happen that I might hear one of the songs from the above-mentioned artists and found I could appreciate them anew. This has been lovely and so unexpected. Now, I despise the Doors too, but that’s almost completely for different reasons, though they certainly received FAR too much airplay in my hearing. My hot hate for the Doors burns brightly still.

But the Eagles? Well, the Eagles I have loathed them for sooooooo many years. They got played so much… they get played all the time even now! I cannot remember a time in my life (since 1972 when their 1st album came out when I was THREE) when more than 3 or 4 days pass before I hear one of their songs someplace – I cannot get away from them except for when I went to camp twice as a kid and when I have left the US, though there was that time in Tel Aviv in 1996……..!

Felder, Walsh, Meisner, Henley & Frey

I know the words to almost every song they released, including many “deep” album cuts and I have never EVER tried to learn the words to any of their songs: the lyrics are just there, stuck in my brain without my permission. There are poems, prayers and many quotes from the Baha’i Writings that I *want* to have memorized, that I want in my brain forever, but nope – they cannot take up residence because the effing Eagles lyrics are taking up SO MUCH OF MY MEMORY.  Then, there was that turbulent time in my parents’ marriage and my dad was playing “Desperado” and “Seven Bridges Road” over and over and over on the 8-track as we drove around in the truck. Nope – I have had NO LOVE IN MY HEART for the Eagles since I was about 8 years old.

Circa 1977 l-r Glenn Frey, Don Felder, Don Henley, Joe Walsh, Timothy B. Schmit

I have even hated the solo work done by Frey and Henley, just on principle. I know it’s unreasonable and kind of stupid – especially when Don Henley writes something d***ed magnificent like “The Heart of the Matter”; I even got mad at India.Arie – one of my favorite artists of the last 20 years – for recording that song (she kills it by the way) because even when I hear her singing it, it reminds me of Don Henley, which reminds me of the Eagles and I get mad at all the space they take up in my musical memory….. I have to admit that there is one exception: I do adore Timothy B. Schmit’s voice and some of his songs (“Love Will Keep Us Alive” is an incredible song and how he sings it….well well well). When Randy Meisner left the band, Schmit became their bassist and he has somehow escaped my ire and animus, and as I am thinking more deeply, I don’t truly hate Meisner, Joe Walsh, Bernie Leadon, or Don Felder either. Maybe I just hate Henley and Frey……No – I admit this rancor isn’t rational or evenly applied, but still I have felt this way for decades.

So in this Ronstadt interview, she talks a good bit about how much she loves the way they all sing together and how first nobody knew Don Henley could even sing ‘cos he was so shy and he was the drummer – a really great drummer. I then watched the thing when Glenn Frey inducted her into the Rock ‘n’ Roll Hall of Fame; I knew he had passed away, but I couldn’t remember why so then off to Wikipedia…I didn’t realize he had Rheumatoid arthritis and was carried off by pneumonia. It’s a sad thing. After watching more interviews with the band on YouTube and part of a BBC documentary and reading more stuff, I went back to YouTube to listen to a little part of just one of their songs – Take It Easy. The professionally filmed and recorded concert from 1977 came up and …. well Sweet Sally Melville, I LIKED it. Those harmonies…….they could really PLAY and sing and write songs. I am appreciating them in a new way, without the angst of the past and – WARNING! PUN AHEAD! it’s a Peaceful, Easy Feeling.  ( I hope my brother who loves puns reads that). I know so much more about music and performing and songwriting, all of which add to my astonishing (to me anyway) change of heart.

Y’all, for me this is like waking up one day, looking in the mirror and seeing a third ear growing out of the middle of my forehead – a crazy surprise. The hate is GONE and I am so happy. Heck, next week I am getting together to jam with a new friend who does some of that late 70’s country rock and who knows? we might even play some Eagles tunes.  Not hating them is a kind of relief, tho’ I still kinda resent their space in my brain. I guess enough time has passed, and I have different kind of appreciation of how challenging it can be to be in a band and get stuff to sound right, or just maybe how it is when we get older. I don’t know.

Don’t get me wrong – I’m not gonna go get tickets to one of their shows, nor will I be playing any of their songs on repeat for a few weeks in the summer (this sometimes happens to me with certain bands – my kids HATE it when this comes upon me).

Circa 2018 l-r: Don Henley, Glenn Frey’s son Deacon, Joe Walsh, Vince Gill, Timothy B Schmit.

But I might listen to them some on Spotify and I certainly won’t feel bad when I hear another tune of theirs unexpectedly someplace. As John Prine says, “It’s a big ol’ goofy world.”

I will say that I thank God that the Doors are not nearly as popular as the Eagles.

 

 

FYI – this post was originally gonna be called “D*** Dog! part deux.

We got a beautiful smaller dog last Saturday. Her name is Hexie. I hope to post some pictures soon cos she is SO cute. Because of Petra and her depredations, I’d put away the last project (see last post) and begun to knit on an UFO (UnFinished Object – we are learning things today aren’t we?): the second sock of a pair of socks I’d started back in 2015.

I love the yarn – lavender/purple, grey & black stripes in a wool /alpaca blend, with solid black for heels, toes and in this pair, cuffs. Once I started knitting on it again, I realized why I had put it away: it isn’t a good marriage of yarn to the pattern. So the stripes aren’t really stripes anymore because of the cables, and the cables make the coloring so busy that you cannot see the cables unless you are up VERY close.

My problem is that I have knit so far into this project – all of one sock and about 10% of the second one that I could not decide if I wanted to rip out all the knitting and use a different pattern that I know will be a far better pairing of yarn to sock. I made the decision to finish the second sock in the less attractive pattern because I have SO much sock yarn in the stash ( I really am gonna have to show you everything I got last Nov. & Dec.) that ripping it back (or frogging as it is commonly known amongst knitters) is basically pointless because I care far more about having another pair of handmade socks for than if the socks were perfect. If they were for a gift, I’d frog them for certain but they are for me so no biggie.

Well, Hexie decided to get into the yarn. It’s not nearly so bad as what Petra did to the other project but WHAT IS GOING ON? WHY do my dogs wanna tear apart my knitting and kill my groovy sock knitting mojo? Bad word bad word bad word.

 

OK ok enough. It’s almost 4 am and I must stop writing.

D*** dog!

We have had Petra for 2 months now and we love her….but yesterday she did a big NO-NO!!!

This used to be a lovely, neat ball of yarn attached to a 75% completed sock.

 

The yarn isn’t actually damaged….but it’s gonna take HOURS!!!!!! to untangle and I just don’t have it in me to do that right now. So I’ll find a ziploc bag to put it in “time-out” for a month or a year or so.  SO FRUSTRATING!  It’s killed my beautiful sock mojo….

But never fear – I’m gonna start knitting a cowl instead.

Actual knitted things

Hell-o! Bet you thought the blog was dead, huh? Well, she won’t actually die….tho’ there has been a famine of posts the last FIVE years or so….

Happy blog-i-versary to me- I think it’s 13 years now (11 on WordPress) but I am just too lazy to go look.

On to the knitting!

Socks for the Force o’ Nature-

Twisty Replacement socks

Completed Nov 2017 (more info on Ravelry here)

Force o’Nature really appreciated these during the summer job which required regular inventory of a commercial fridge. Wool socks keep you warm!  So this led to these –

Lou’s Envy

Completed December 2018  Love this pattern – will be making some for me in this pattern SOON.

More info on Ravelry of course.

SO while I was looking for something else, I found the original socks I’d made for the FoN – which needed darning because MOTHS! AND all my darning supplies, so the FoN got both pairs for Christmas.

Moderne Cable Socks

These were completed back in 2014. This was why I made the Twisty replacement socks – first I knit one of the brown ones, then completed the second, then couldn’t find the safe place I’d put the first one. Months passed, then I found them both, gave them to the FoN in June – who said they didn’t want them til winter. Put them away then couldn’t find them AGAIN. Many months passed. Found them but then one had serious moth damage so I needed to darn them but then couldn’t find the remaining matching yarn. More than a year goes by, I suggest I make the FoN different ones – detente achieved.   Finally found everything, darned them and gave them. Phew!  project page on Ravelry here.

Grinchy Green Almondine

Completed December 2018  These are for me. LOVE LOVE LOVE them and they have 10% cashmere in the yarn blend. Luxury! Ravelry project page

A lot of this sock knitting has to do with the fact that I am a complete convert to the Fish Lips Kiss Heel.  I find it makes it easy to make socks that FIT pretty much perfectly. Found out last summer that my sock knitting sister-in-law (she’s far more productive than I am!)  also uses this heel. I recommend it.

Next up – a cowl for a dear brotherfriend-

Mistake Rib Cowl

This has been done for AGES. Finally it is blocked and photographed. Hope to get in the mail this week.

Ravelry project page

And another pair of socks for Studmuffin!

Pour Mon Mari

I’ve never made him socks before. Completed last week! (Jan 2019) And they fit.  They are not IRL as purple as this pic, much more dark green (he loves greeen).  All blocked and photo’ed and gifted. Project page on Ravelry here

Started knitting another pair for me out of a black and magenta Zauberball.  I’ve tried this yarn in 2 other patterns and have not liked the sock I was making and frogged it both times. I am using this pattern Fidelio and although I’m not getting the “rhythm” of the pattern easily, I think I like the socks I’m making, so perhaps the third time’s the charm.

Duke of Curl is up for a new hat, Bought more yarn, will post another time. Need to make something for my momma…..

 

How are you? Happy 2019!

A yarn crime….almost

Hey folks! It’s been a minute….I have no excuses.  So I do still see yarn crimes out and about and of course on the ‘net. Items with pompoms are serial offenders I have to say…..

I saw this just moments ago, but it’s so flippin’ cute, it transcends the criminal nature of the offense IMO. Here ya go!

If you have a dog (or perhaps some other pet/offspring…a POMeranian?!?) willing to wear this, here’s a link where you can get the pattern:

https://www.ravelry.com/patterns/library/blue-dog-hat

My intention is to post more frequently but less wordily. Maybe that’ll help. 🙂  Love to hear from you in ze comments.

Linen sheets to lie on…….

Flax plants in bloom

Been awhile. How’ve you been?  I think of you often. 🙂

Katherine Tilton has done a lovely guest post on Marcy Tilton’s website about making linen sheets. This is so serendipitous for me because I had just finished a linen flat sheet for our bed a few days ago, and am planning to make the fitted sheet this week.  Katherine has really laid it out so clearly what to do – I’m definitely gonna follow her guidance.  But…I have a wee problem. Ok it’s not a big problem or even a real problem; it’s a 1st world problem like……

One of my lifelong pet peeves has to do with putting the fitted sheet on the bed. It’s not my favorite chore, I have short little T-Rex arms which makes it more challenging for me than for other people who live with me. Countless times I thought I had the sheet oriented properly to the mattress and I have gotten 2 corners on the mattress, only to find that, NOPE! I don’t have it oriented properly and have to start over. This frustrates me too much!  I overreact to this….and it’s silly. Really, it’s such a small thing – why let it upset me so?

 

So I’ve been thinking about what to do and a solution came to me IN A DREAM. I kid you not.  It’s simple, it takes longer to write it out than to show it and here it is:

I will put ribbon tags in 2 colors in the corner seams near the hem and they’ll show a little bit on the right side.  I’ll be using lavender and grey ribbon b/c those are what I have on hand.  Here’s my lousy diagram A:

And so here’s how the colors will be placed (lousy diagram B):

So if I’m putting on the sheet facing either long side, I’ll know that the sheet is properly oriented if I have 2 corners with tabs of the same color. If I’m facing a short side – top or bottom, it doesn’t matter – if I have corners with tabs of different colors, the sheet will be properly oriented.

-/-

These tabs will take me maybe 15 minutes of sewing time to do, but they’ll save me so much frustration……I may do this with all my sheets. 🙂

-/-

So by this time next week, I’ll be sleeping on my fitted linen sheet and under my linen flat sheet for about 20% of the cost. Don’t EVEN get me started on the pillowcase neurosis……..!

Flax fiber in various stages of preparation for spinning

 

If you’re a glutton for punishment, enjoy silly animated GIFs and you’d like to know the whole nine yards about this linen sheet thing (and yes it has really been a THING for me), read on for the backstory.

Multi-day Music Challenge (long post)

One of my longest friendships in life is with Tina K. and I love all the stuff she posts on Facebook. She LOVES to go to concerts and she has been to more than probably anyone else I know (pssst – that’s a LOT!!!!!!).

She’s been posting these every day on FB, and since I will forget to do this every day PLUS I’m procrastinating (who wants to do what actually has to get done today?), why not write a blog post about it?

A bit of a warning – my taste is eclectic….. I could do a bunch of these using themes…… favorite songwriters only, foreign language, heavy metal, folk music, the 1970’s…..I’ll save that for another procrastination day.

Day 1 MUSIC CHALLENGE :
A song with a color in the title

Absolutely no contest with this one. 2 versions – original and SuperBowl

Day 2 MUSIC CHALLENGE

A song with a number in it

There are so many…..but I simply adore this song and have since I was a kid.

Still alive

Sorry no blogging in so long. Been insanely-busy.

Hope everyone is well and happy. I still have loads to write about, but just have no time….nope not even for Pinterest, Ravelry or Facebook – 3 of my online faves/go-to’s. Oh well, it’s good to be useful. See all y’all later.

Let’s talk about a “made up” holiday…..

So I was talking with Studmuffin about a week ago about the holidays that are happening now, and he said something about Kwanzaa that I have heard many people say – something about how it’s a “made up holiday”…

 

I won’t go into all of the parts that offend me about that statement, and I don’t wanna go into a full on rant here, but there are a few points about holidays I really would like to bring up.

1. The biggest holiday in the world EVER is MADE UP.
2. What do you think Jesus might say about the principles of Kwanzaa?

So for point #1 – the biggest holiday that has ever been celebrated is Christmas*. I wish to be clear: Jesus certainly was born and it absolutely was a miracle and I love celebrating the Birth of Christ. I revere Jesus so greatly – I cannot even find the words to express my love for Him.

!!!!!!!!BUT!!!!!!!!

a.) It is quite clear that Jesus was not born on December 25th or on January 7th; the date and time is not known. The exact year and season is up for debate, but was almost certainly not in the winter. So the date for the world’s biggest holiday ever is MADE UP. **

b.) Many of the most cherished traditions of Christmas have nothing at all to do with the birth of Christ: the lights, the tree, the giving of gifts, the feasting, mistletoe, holly, drummer boys, Yule logs- along with reindeer, sleighs and Santa (more on him below).

c.)  Santa Claus is sorta, kinda related to Saint Nicolas, but most of what  is even said about Saint Nicolas is myth, i.e. MADE UP. ***

Of course the best parts of Christmas are not made up – celebration of the Birth of Christ, peace on earth, goodwill towards men, generosity, family, love – all of that is real and true and so worth celebrating. I look forward to this part of Christmas every year! But all the rest of it is MADE UP.

Coming to my 2nd point: when one mentions the made-up-ness+ of Kwanzaa, why is that the thing that gets mentioned? Is it that we are somehow concerned that a made up holiday – that is not nearly so old, so widespread or very familiar – is somehow conflicting with another made up holiday that is old, widespread & familiar? I don’t get it.

First, let’s take a quick look at Kwanzaa: it began to be celebrated in 1966. It is a week-long celebration held in the United States and in other nations of the African diaspora in the Americas. It was begun – yes, MADE UP – by Dr. Maulana Karenga, who is still living (age 76 in 2017).  It was established as a means to help African Americans reconnect with their African cultural and historical heritage by uniting in meditation and study of African traditions and Nguzo Saba, which are the “seven principles of African Heritage” – which Karenga said “is a communitarian African philosophy”. ++

Unity

These principles are:

• Umoja (Unity): To strive for and to maintain unity in the family, community, nation, and race.
• Kujichagulia (Self-Determination): To define and name ourselves, as well as to create and speak for ourselves.

Self-determination

• Ujima (Collective Work and Responsibility): To build and maintain our community together and make our brothers’ and sisters’ problems our problems and to solve them together.
• Ujamaa (Cooperative Economics): To build and maintain our own stores, shops, and other businesses and to profit from them together.
• Nia (Purpose): To make our collective vocation the building and developing of our community in order to restore our people to their traditional greatness.

• Kuumba (Creativity): To do always as much as we can, in the way we can, in order to leave our community more beautiful and beneficial than we inherited it.
• Imani (Faith): To believe with all our hearts in our people, our parents, our teachers, our leaders, and the righteousness and victory of our struggle.

 

What part of the 7 principles above do you think Jesus would object to? Unity?

 “My prayer is not for them alone. I pray also for those who will believe in me through their message,  that all of them may be one, Father, just as you are in me and I am in you. May they also be in us so that the world may believe that you have sent me.  I have given them the glory that you gave me, that they may be one as we are one—  I in them and you in me—so that they may be brought to complete unity. Then the world will know that you sent me and have loved them even as you have loved me.”      -John 17:20-23  NIV

How’s about self-determination?

“Who serves as a soldier at his own expense? Who plants a vineyard and does not eat its grapes? Who tends a flock and does not drink the milk?  Do I say this merely on human authority? Doesn’t the Law say the same thing?”

“Do you not know that in a race all the runners run, but only one gets the prize? Run in such a way as to get the prize.”

                                                                   – 1 Corinthians 9:7, 24 but you should really read the whole chapter…..

Purpose

 

OK, let’s look at collective work and responsibility:

“Carry each other’s burdens, and in this way you will fulfill the law of Christ. …Each one should test their own actions. Then they can take pride in themselves alone, without comparing themselves to someone else,  for each one should carry their own load. ”

– Galatians 6:2, 4 & 5

Creativity

I think you can see where I’m going with this…….I’m no Biblical scholar by any stretch of the imagination, and I’m certain those that are could find many, many more quotes from the Bible that uphold these same ideas. I cannot see any conflict at all with the ministry, laws and precepts of Jesus and the principles of Kwanzaa. Goodness knows ALL people on the planet would benefit from these principles.

Faith

So I delight in wishing you a Merry (made up) Christmas and a Happy (made up) Kwanzaa!

 

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* Some lists have New Year’s Eve/Day as the biggest and oldest world celebration (like this one- 10 Most Celebrated Annual Holidays Around the World wonderslist.com 2017 (March/April?). However, as all of the world religions each have a different calendar, the date of the beginning of the new year is different than January 1st for a couple of billion people, whereas there are billions of people who celebrate Christmas, whether as a religious holiday or a secular one.

**You can read more here- When was Jesus born? LiveScience.com Jan 30, 2014     And here- Was Jesus born on December 25? United Church of God’  Beyond Today Jan 25, 2011

***You don’t have to take my word for it- Five Myths about St. Nick – Dec. 21, 2017 Washington Post

+ Yes, I just made up that word. 🙂

++ from Wikipedia Kwanzaa