blessings

The Invader – #15

So yeah, it’s been QUITE a while. Basically it’s a combination of my general laziness (a serious character flaw I think) and the fact that there’s not a whole lot to tell.

I feel I should point out that when one has cancer, that one really doesn’t WANT things to be “exciting” because “exciting” often translates to “deadly”. Yup, I much prefer boring to exciting at this point.

So here’s what’s happening right now: every other week I have maintenance chemotherapy, which involves wearing a medication pump from Tuesday through Thursday. FYI there’s nothing *special* about Tues- through Thurs – it isn’t somehow more efficacious treatment or anything – it’s just that I usually have a Tuesday appointment for treatment and then I come back on the 3rd day to have it disconnected.

My bloodwork “numbers” are generally good – there is one pesky number that is trending in a BAD way, but it’s moving so slowly that it’s not clear if that’s bad news or if there are new lesions to be found someplace other than my liver…..such as the brain or my left big toe, etc.. Or it just could be something idiosyncratic……

As a tangent, let me say how much I *love* the word idiosyncratic. For those that aren’t supernerdy like me who is forever looking up words I don’t know in a dictionary (now all done online since Studmuffin got rid of my physical dictionaries…which makes me a bit sad)-

I miss my dictionaries fool!

Idiosyncratic means “having strange or unusual habits, ways of behaving, or features; something peculiar to an individual”. I have idiosyncratic reactions to many drugs, which during this cancer thing has mostly worked to my advantage: my original diagnosis said my expiration date was about April 2021 – and it looks like I’ll be around a fair while longer….of course there was the nearly dying part that happened last summer but you know, it’s all kind of a gamble. But I do love language and I am not afraid of using “big words”. Often “big words” have the nuance of meaning that I want to share….and then there’s another of my character flaws – using WAY too many words. Brevity is NOT my strong point. Just another idiosyncrasy. 🙂

Oh doncha just love the movie Beetlejuice?

In case you are wondering, I am fully vaccinated, as are all of my immediate family for which I am HUGELY grateful. Yesterday, I actually went to a restaurant with a couple of friends (everybody in my group was vaccinated and we practiced masking and social distancing with everybody else) which was really lovely and then shortly after I got home a dear, dear friend who used to live here but now lives in NY dropped by for a few minutes because she was in town – so so so great to see her! She and her DH are vaccinated too so we did hug. At the end of this week, gonna go see my mom for about a week in Virginia. Then after we get back, Studmuffin’s baby sister and family will be in town on their way from Iowa to Florida. THEN Studmuffin will be travelling the following week for work. I feel very ambivalent about his travel as he just does NOT take the COVID precautions seriously enough, especially when I am not around. Yes, things are better and our/my risk is much lower, but we are NOT done with the pandemic yet and COVID is NOT just the FLU.

If you are not yet vaccinated for whatever reason, I sincerely hope you will get vaccinated and soon. Yes, I’ma get up on my soapbox for a minute to say : vaccines in general are a HUGE benefit to mankind, and from all of the folks I know who have had COVID – they each and every one say “You DO NOT WANT to get this!” The science behind vaccines is factually unassailable – if you are wondering about it, I can give you some good references – just leave a note in the comments. Personally, I feel very grateful to live in a place when the vaccine is actually available to everyone – far, far too many people in this world do not have any access to it at all and won’t for months, even on into 2022. Please please please do yourself a favor and get vaccinated.

Ain’t no party like the vaccine party yo!

And yes, I’m doing some knitting. I tried to do some test knitting for an Estonian knitter that I tremendously admire, but I was defeated by my “chemo brain. She was just lovely about it, and I will get back to it. Sometimes when one reaches a serious roadblock in one’s knitting, it can be helpful to put it aside for a while and then later, when you take it up again, somehow your backbrain has resolved the intellectual hurdle you had and you can proceed. Amazing how that works. Currently, I have a second sock on the needles and I started this kind of poncho/topper thing to wear this summer. It’s Alabama and it’s hot here and my upper arms are seriously NOT pretty so I like to cover them, but you wanna make sure whatever you cover them with is lightweight or lacy enough so you don’t overheat. I tried to buy something rather than make it but everything I liked was SUPER expensive and the stuff I could afford was seriously dowdy or downright UGLY. So I went stashdiving and found some wonderful yarn that’s been marinating for several years. I no longer recall what project I originally bought the yarn for and since I’m significantly smaller than I was than when I got the yarn there will be leftovers…. When traveling this week, I’ll have a couple of projects with me and I hope to get a good bit of knitting in. Gosh, I might actually take some pictures and put them here on my knitting blog! IMAGINE THAT!

Lastly, let me say again that your prayers have been so wonderful – I attribute most all of my current health status (i.e. NOT DEAD) to your prayers. Thank you so very very much. And if I may be so bold – please keep praying for me. Thanks a million times over. Until next time…….

The Invader – #14b (part 2….?)

Hey y’all! How’s it goin? Happy new year and all. Hope nobody’s gotten COVID…….

Happy new year cartoon

I know last time I told you I’d write in a few days and I really did mean it when I wrote it….. then THREE MONTHS goes by….what the heck happened?

In short – first lemme say my health is pretty good, so not to worry, and secondly, I was hit by my first ever case of writer’s block. So yeah. Writer’s block for me isn’t that I cannot think of what to write; if you know me in real life (IRL) the verbiage flows from my mouth like an endless river, which is kind of how my mental chatter is (probably TMI …..)

When I write, I kind of just pour out onto the keyboard my thoughts and VOILA! a written thing appears.  Like what’s here now. 🙂

No for me, writer’s block means that I cannot make myself face the keyboard to write down my thoughts AT ALL. I got a huge pile of “don’t wanna

and another pile of “ain’t gonna

 

with a generous side dish of “shouldn’t have to“.

donadl duck

 

These are all very familiar to me – I am a CHAMPEEN procrastinator doncha know – but I have also a number of rather effective strategies that I use to defeat my “brain rats” and get stuff DONE. I mean – to be even a minimally effective parent one must learn how to do what’s gotta be done, and I think we can all agree I’ve been a minimally effective parent to my three  children…..

White mother with 2 smiling white kids -

Yup, all 3 of my progeny are still alive, in fact are grown-ups now, so check that box….

 

But I know y’all aren’t nearly as interested in my writer’s block as I am – you wanna know how I’m doing healthwise. 

So I’m doing OK.  I have chemotherapy every other week. My hair was falling out, but then it stopped. I have some side effects that are slowly and unevenly growing worse over time, but I knew that would happen.  My bloodwork numbers are still good though they do fluctuate and I don’t know if the amount the numbers are fluctuating is “normal” or if I should worry. So I go with my default position….which is to worry. Not too much, you know just enough to stay in tip-top worrying form! I know that CHemo brain is REAL. My memory has worsened quite a bit and I am having a hard time retaining most any kind of new information but it’s OK.

 

 

 

WARNING – ACTUAL KNITTING CONTENT BELOW ( didja know this used to be a kniting blog some of the time?).

One thing that’s lovely is the neuropathy in my fingers has abated enough so I can knit again. I didn’t knit for about 7 months in 2020 and I was beginning to think I’d never knit again (which then brings on the challenge of what to do with the STASH – oh no!).  So I’m working on a pair of socks I started knitting QUITE a while ago. Well-fitting woolen socks are just so delightful to wear when it’s cold! I now have a pair for each day of the week and will keep on knitting socks til I die. Socks are fun to knit. One of my lovely sisters -in-law has knitted many more pairs of socks than I and she doesn’t even like wearing handknitted socks on her own feet ; she just likes knitting socks and so do I. YES I know it’s Alabama and it’s not that cold, but here’s the great thing: woolen socks don’t generally get too hot – they breathe because they are wool and so are fine to wear when it’s only coolish out. Plus my feet do get cold very easily these days. Who knows? I may actually post a picture of my own knitting here fairly soon.

Some people DO knit this fast. I, unfortunately, am not one of them…..

AND I hope to get the COVID vaccine ASAP.

 

I really did plan to write more about last summer’s hospital stay and all – who knows? I may yet do that. But I do wanna get this posted before more time flies by…. So how are YOU?  Always love to read yer comments.

 

 

OH!  And thank you SO SO SO SO MUCH for all the prayers. It means everything to me. Please keep praying for me. The doctors are kinda confused by how well I’m doing and I believe it’s the prayers. Y’all – I can FEEL them!  Thank you thank you thank you.

Sending love to all y’all.

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.

Thank You!

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 – #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.

Clock GIF - Find & Share on GIPHY

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.

Keep calm & accept Murphy's Law

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.

kid as a doctor

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……

punk rcker with black and purple mohawk/mullet

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!

text that says hip-hip 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….

blue fright wig

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.

cartoon of a smiling liver

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!!!

giphy

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.

keep calm and just wait and see

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.

thanks a million

Thank you fifty skadillion times over.

It means EVERYTHING to me.

I’ll keep you posted.

Je vous remercie

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.

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.

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!

 


* 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

A post I didn’t want to write

Today, the second of our beloved pair of “Labramatians” died. Miss Natasha has been declining for some time, and when I recently went out of town, I was quite sure she wouldn’t be here when I got back. But she was!

She didn’t like having her picture taken somehow.

For a dog of her size, she was very elderly – about 105 in people years; she lived 15 & a half actual years.  The last 6 months or so, she seemed to be free of the itching/scratching & everything else that went with her parasitic infection (leishmania); I think she outlived the parasite! She was a tough cookie. Her skin healed, her fur mostly grew back in and  she gained weight.

A happy, hot day at the dog park – before leishmania. She’s about 11 years old here.

 

Anyway, she had mostly stopped eating almost 2 weeks ago and I knew it would be soon that she would leave us.  Studmuffin was feeding her raw ground beef.  Tasha loved chocolate; she used to get into swap packages I received – climbing up on places I didn’t think she could get to & tearing them open with her teeth if they smelled of chocolate. Because it was clear to me she was dying, I fed her as much Halloween candy as she wanted. I’m so glad I did. Tasha seriously loved her food.

She had 2 seizures today. After the first one, I had the Duke of Curl put her on some blankets on the couch; she just loved to lie on the couch, she wasn’t supposed to do it but I often caught her at it. After several hours, she tried to get up/turn over and I helped her. That’s when she had her final seizure. I am so glad I was with her.

Natasha (L) & Boris (R) – at about 8 years old.   I’m so grateful to have been a part of your pack.

We will have dogs again I am sure, but gosh, they leave such a big hole when they go. It will be some time before I am ready again. I am so grateful to have had Miss Tasha & Mr. Boris in my life….. So sad to be writing the end of the Boris & Natasha adventures.

I sure hope, my Tasha, that in your happy hunting grounds, there are UPS trucks for you to chase, raisins & chocolate and garbage for you to eat and Boris is there to endlessly lick your ears.  I miss you already, my brown-eyed girl.

A question of discipline

A Facebook friend has a 14-year-old daughter and her husband, while she was working, took the daughter to see a horror film that was really probably not a good thing for the daughter to see. She was feeling pretty conflicted about it and asked for the opinions of other parents….

An opinion? Why yes I *do* have an opinion!  I know you are simply shocked to learn that…… 🙂

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I started writing my response and, well, decided it was way too long for a Facebook post on someone else’s timeline and so moved my reply here.

I did my very best to keep my kids away from things that I thought would harm them. When our oldest son was a toddler, my husband was out of work and so during the day, while at home with our child, he would watch anything at all he wanted to, thinking it would have no effect on our son. After a  time we noticed our son acting out more and more physically and I found out about my DH’s tv habits.

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This was one of the shows he was watching daily with our son…….

I asked him if we could try an experiment: for 6 weeks, while our son was around/awake only non-commercial kids-oriented television would be watched, saving ad-filled and adult oriented tv for night-time or when our son was out (like with Grandma). Within 2 weeks, we noticed a big and positive difference in our son’s behavior, and so we went on along that way with all 3 of our children.

So, my children were not permitted to watch PG-13 movies before they were 13, unless either one of us had seen it before and deemed it appropriate. I also had seen some scientific evidence that caffeine possibly can prevent kids from growing to their fullest height, so they were not allowed caffeinated drinks (sodas, teas, coffees,etc.) til they were 15.

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Of course, I was unable to enforce these rules when they would stay over at their friends’ houses, but I was very persistent at home. Oh and how they would argue and complain about how mean I was!!!! How stupid my rules were! Nobody else had such stupid rules and so on….

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When, in turn,each one of them came to me to really talk/discuss (not just complain) about why I had such rules, I would tell them 3 things:

1) My children are the most precious things in my life and I want the best for them, plus I’ve given a lot of thought as to what would be best for them – it’s not about a power struggle.

2) Ruhiyyih Khanum told the story of when she was young, she very much wanted to read a certain quite scandalous book and her mother refused to let her read it. Her mother gave the analogy of a pot that has been formed and dried, but hasn’t yet been fired in a kiln (the greenware stage). Anything can easily make a mark or a dent in that pot and that mark will be permanent. Young people are just like that greenware and until they have been fired in the kiln of life experience,it is better that they be protected ( all 3 of my kids had done some pottery so they knew that this was true).

 

3) When you attain the age of being able to do these things (13 for those movies and 15 for the caffeine), you will enjoy them a huge amount more than you would have if they had always been permitted to you. When you are young, those ages seem so very far away, and I know because I have been those ages – I have the perspective of age and I know that waiting will not harm you in any way. However, my rules and these protections, as stupid as they seem now, are truly a gift from me to you.

My youngest is now 18 and 2 of my 3 children have affirmed that those rules were “probably a good idea” and one of them even apologized to me for arguing with me about it AND that they had tried to stay a certain friend’s house very often so they could break these rules “behind my back”. This grown child of mine said that even then, he could see the benefit of the rules, as his friend didn’t have them and in many ways, it took away his childhood innocence too early. This same child also had nightmares for years about one scene in “Shaun of the Dead“. I’ve seen it and it isn’t really that bad, but he knows now that he saw it when he was too young and it made a big impression on him.

 

Your mileage my vary, but I am in a stand for enforcing such rules, and most of the time it’s no fun, lemme tell you. Once something is seen, it cannot be UNseen, not until somebody invents brain bleach or something, and your children are worth it. Innocence lost is exactly that – lost.

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I was never in a hurry for my kids to be grownups. Childhood is very short nowadays….

The purveyors of movies and tv advertising DO NOT CARE about what is best for your children, they care about your money; do not let them make your parenting decisions for you. We are the protectors of our children and also the educators – the responsibility is ours and the world will do all that it can to tell you just how uncool you are for doing your job.

Good luck!

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ELEVEN years?! Really?

So yeah. As of January 21, 2017 I’ll have been blogging for 11 years. That’s an accomplishment of some kind………?

I know posts have been quite sporadic the last 3 years – I do apologize. Without going into great personal detail, the last three years have been quite difficult and I certainly could have shared lots & lots more….I decided not to do that. Because to me, whinge-ing is more like funny complaining, which I believe is my God-given natural talent. Sharing woes is best done with one’s closest friends perhaps or family or most definitely one’s therapist (shoutout to Dr. F. P.!!). BTW, if you enjoy comedic whingeing, you might enjoy the BBC tv series “One Foot In the Grave” – I’m certainly not up to Victor’s level!

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I’d never planned to go on so long – certainly I cannot say that I’ve had a huge following…..but still, plugging away at anything for such a time tends to improve skill….

I believe I have gained some skill in writing, and creating the posts for the most part has been joyful. But wow, even I’m shocked it’s been 11 years.

I’ve also considered closing it down…..but as it costs me very little other than time and brain power, I’ve decided to keep going, however infrequently.

I hope to blog more consistently about knitting in 2017, God willing.

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Thanks to everyone who’s ever read this blog and enjoyed it. 🙂


P.S. You can still read my very first post here.    The 1st Knitting and Whinge-ing post

 

I notice…

I notice the ridges in my fingernails
‘A ha!’ I think, yet another sign of age
I am, by turns, horrified and fascinated
By these ever more numerous energetic strands of hair that surprised my little brother.
‘Oh! Silvery!’ he said, while sporting some of his own in his beard.
Now that my steps are limited to daily dozens – I am, of course, grateful for them and parsimonious with them – still…
I wonder how many more I might yet make?

I’ve been blogging for HOW LONG?!?!?

I swear I’d lose my head if weren’t attach-….HEY!!!!

 

The Yarn Harlot was just celebrating her most excellent blog’s anniversary and it made me curious: how long have I been blogging now?

It’s not how you feel, it’s how you LOOK….

I went back to the first place I blogged (Livejournal – it’s still there…..if you look for it) and saw the date:

THAT’S NINE YEARS! I have to go lie down now…..

Perhaps not *quite* like this……

 

 

Actually when I think of her success (the Yarn Harlot’s) in blogging, I feel like this:

.

I’ve been blogging only 2 years fewer than she has…….how come? Why not me?

But then I remember:

  • she’s far more regular in her postings than I
  • she’s a better knitter than I am
  • she’s far FAR funnier than I am
  • oh yeah: she’s a WAY better writer – she’s been Canada’s top blogger of any kind for years!

When I think of why I started; I didn’t start this blog to get famous or a livelihood or nuthin’.  I did it because my friends Meg & Joe thought it might be fun for me.

THEY WERE RIGHT!

I’m tickled that ANYBODY reads this!

Thanks for everybody sticking around at all through this time. Who knows? I might go another nine years….

Happy blogiversary to me!!!

Now go read the Yarn Harlot’s blog. 🙂

This lengthy blog pause has been brought to you by…..

….a whole bunch of things – let’s call it a life tsunami..perhaps tsunami is too big, the wrong scale for what’s been happening, but I’ve been really SWAMPED and overwhelmed.the-wave

I’ve been missing y’all though. So even though my darling readers (both of you) really deserve an extensive update, I’ve not got it in me.  Still, going with the idea that something is better than nothing here’s what I can give tonight: BULLETS.

  • My mobility from the end of February to early August was next to nothing – lots of pain & very hard to get around at all. That, coupled with increasing incontinence (I know – TMI!- but hey….), made gardening this season a joke – even with 2 beautiful keyhole gardens. That’s why no gardening speak on de blog. Sorry ’bout that. I hope to talk some about the garden in the next month, including the story of what happens If You Ask an Engineer to Design a Bean Trellis….
  • Modern medicine to the rescue -I got a steroid shot in the right ankle & another pill to take (vastly decreasing the incontinence(!) at the end of July and therefore was able to go on the first One Human Family Workshop Choir Harvest Tour – the first one in 9 years by my count. The ankle is still going pretty good and I no longer have to carry a towel and a spare set of clothes with everywhere I go…..

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  • Sang way too many low notes on tour ( I spent a good deal of time singing BASS – can you say ‘stoopid’? – & then talked my face off til 2 and 3 and nearly 4 am most nights…so the voice was TOAST when I got back home.  Then I got summer bronchitis….still coughing up nasty stuff 3 weeks after the course of antibiotics and do not have my high notes back yet…..
  • Celebrated TWENTY YEARS of NOT SMOKING on Labor Day weekend. Thank you God so much.
  • I’m still knitting on my Shaelyn shawl…which I’m thinking I will give to a dear friend instead of it being for me.  I had to tink back about 8 or 9 rows because of some really stoopid mistakes, but all is well and if I really knit on it every day I’ll have the knitting done in 5 to 7 days.
  • I’m most of the way thru the foot of a sock in a retina searingly bright neon sock yarn ( I just realized I have not even put a project page in Ravelry for this yet….aack!) and gonna try out the Fish Lips Kiss Heel on this pair.
  • I’m on a hat kick…again.  I’ve made 8 hats since January – here’s a few:      .. . . …. I’ve got one on the needles right now in lovely squishy Brioche stitch and gonna make AT LEAST 5 more pretty soon.  More & better pictures will happen…at some point. STOP LAUGHING!
  • Number One Son is supposed to move from NYC to Northern Virginia soon.  I hope all goes well.
  • The Duke of Curl was supposed to start college this fall as a computer science major, but decided at the absolute very last minute NOT to take on the $10,000 debt( and not allow us to take it on either) that would’ve been necessary for that to happen.  SO he will start at community college in January and is currently looking for work and generally being a sweet fella to be around.
  • The Force of Nature is focused on going into the Coast Guard after graduation from HS in a couple of years – more specifically the Coast Guard Academy and has been visibly doing HOMEWORK and has started running for actual exercise 3 days a week; she informed me today that she is on the A/B honor roll.  We are beginning to think some kind of alien abduction/ switcheroo kind of thing took place while we were in the bathroom probably…..
  • Studmuffin is still sticking with most of my dietary changes and so has lost about 25 pounds.  He has also discovered a deep and voracious love for grapes. Eating about 5 lbs. per week with little help from the rest of us.  I’m not complaining – just a bit amused.
  • The last 3 weekends I was off doing singing things – that’s an unusually high ratio even for me. I will write about 2 of the weekends for sure and soon.
  • The pets are endlessly amusing and every one of them sheds a bunch.  I am sick and TIRED of hair control….. Still, they continue to be charming. Currently, the are two cats surrounding the keyboard, the younger one keeps tryna lick my fingers and then licks the older cat’s head…..weird.
  • My potential career as a 911 dispatcher was cut short by my inability to type 35 wpm (I got 34 wpm) ::::sigh:::::  Need to find some employment – orthodontics aren’t cheap and neither is college tuition.  Plus, we need a new roof and well, you get the idea.
  • Work on the book is ongoing but slow. I am determined to get a first draft completed by the end of December!!!  Of 2014!!!
  • I’ve been flirting with sewing clothing again.  I’ve bought fabric and patterns at least….very little sewing has occurred.
  • Been practicing the piano most days for a good bit of time ( guess what? If you practice, you get better! who knew?)and have the opportunity to do a couple of house concerts too. We’ll see…….
  • I have been horrified at the killing of unarmed black people by the police for some time – I really became aware of Driving While Black about 20-25 years ago and started learning a lot from there on in. This summer has been truly remarkable (and mostly not in a good way) for the 1) wealth of information about white police officers killing/tasering black people with impunity, 2) the staggering naivete/ignorance/apathy of most white people about how different life is for black people in the US especially when it comes to law enforcement, and yes, I am gonna write about it here too.      albert einstein                                 I’ve been sharing a lot on Facebook about it and some people close to me really do not like it but I cannot be silent about it!  Even on my knitting blog. I encourage absolutely every person on the planet to investigate what is happening for themselves – do not take “the media’s” word, do not take the police’s word, do not take my word for it – learn about it for yourself. The truth will set us all free and then justice can take place and then unity will appear.

So much for brevity.  How’s by you?

5 Days Left!!!!

“For what?”  I hear you thinking.  I’m so glad you asked!!

2002 Harvest Tour - Wilmette, IL

2002 Harvest Tour – Wilmette, IL

One Human Family is going on tour in the beginning of August for the first time since 2005, & this tour marks the first time that OHF is using online “crowdsourcing” to help defray the costs of the tour and we have 5 DAYS LEFT in our campaign. Always the leadership has tried to keep the costs of the tour as low as possible to encourage as many people to participate in that transformative experience called the Harvest Tour. To keep costs low, the organization has often chosen to go into debt; this time it is different and you can help make this difference.

More and more, we see people the world over struggling to overcome all kinds of difficulties brought about by longstanding prejudices & hatreds, lack of communication, understanding & education, often without the basic knowledge that we are ONE HUMAN FAMILY.  The OHF organization since its beginning 16 years ago has always been about making those connections, overcoming those barriers, ever increasing and strengthening the bonds of fellowship, friendship, love and understanding everywhere we go.  We do it with workshops, with travel, sometimes even a little “cussin’, fightin’ & carryin’ on” – but mostly with conversation, with laughter, and most definitely with music in praise of God.

See us in action in British Columbia!


(more…)

Are you being yerself?

Reblogged from here  (I do have stuff to write about, but this felt plenty eloquent to me & I wanted to share it.  Love, Helen)

How much of yourself are you?  Do you feel like you are surrounded by people with whom you can be yourself? When’s the last moment when you feel that you were  yourself? ….

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I’ve been thinking a lot about the idea of being yourself versus not being yourself.  I know that’s a bit silly.  You are who you are and therefore, you are yourself, correct?

Maybe. In life, no one ever comes out and directly says to you: “Don’t Be Yourself.”  But I feel it’s a message that we receive every day, not just from others but also from ourselves.  Many choices we make in life support the concept of “don’t be yourself” because, in many ways, we begin to think that we’re not good enough.  That we are lacking.  And to overcome the lack and to increase our worth, we must make up the perceived deficit by pretending and acting like we are someone other than who we really are.

When we choose not to be ourselves, we think we are gaining.  Gaining approval and accolades from others. Gaining respect.  Gaining the worth that we think we need to fill up the empty space inside us that results from not being ourselves. But do we really gain?

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I think no.  I think we lose.  I think of times when I stopped laughing so that it wouldn’t seem like I was out of line, when I stopped crying because I didn’t want my tears to be a bother to anyone, when I stopped choosing what I loved in order to take steps up a ladder that maybe I never really wanted to climb. When you choose to be yourself, you have to choose to be okay with being yourself.  You have to choose yourself over and over again.  It can feel vulnerable to be yourself, and re-open the door to what other people think about you (what people like about you can take you just as much away from your real self as what they dislike about you.)

Woman Standing at Fun House Mirror      OR           beyou2

I’ve been practicing being myself more often.  Choosing howI am more often over how I am not. Being more aware of when I make either choice, and how it feels when I choose one way over the other. When I choose myself, it feels good, and that’s a good incentive to keep trying it out.  I am comforted by the idea that by being who I am, I will attract all the people into my life who love me for me, not for who they do or don’t want me to be.

In my imaginative, creative, romanticized world, I have a lot of ideals and philosophy.  I also have a bit of reality mixed in there, and I know that it’s probably within the reality that messages like this one connect.  It’s easy for me to say….”just be yourself,” but I know that years of choosing otherwise might make that a difficult starting point.  What if you don’t even know who you are?  What if you’ve shifted into neutral for so long that you don’t know what it means?

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I recently shared a quote with a friend that said: “do what brings you more joy,” and he laughed and said, “easier said than done, what if I don’t know what brings me joy in the first place?” So, here are some possible starting points for you.

  • First, think about who you were as a child and what you really loved to do.
  • Second, think about the last time you felt a bit of positive emotion in your life and see if you can reconnect to what it was that generated that feeling for you.
  • Third, just start listening to yourself.  The signals may be hard to pick up on at first but the more you listen, the more you’ll start to feel…oh, I like this, oh I love this, oh, I want more of this.
  • Fourth, give in just once in a while.  Laugh when you want to laugh, sing when you want to sing, cry when you want to cry.

Just be yourself.

-Rachel

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Happy Naw-Ruz!

I have updated, added photos and new content (especially about teaching!) to “Yahoo! I’m a Baha’i!” as part of my gift and service celebration of Naw-Ruz. So read it again if you have a few minutes please. I would love more feedback!

And now: Here’s a lovely video for you! Please ignore the ads that sometimes come up – I’ve not got any control over those unfortunately. There’s another one here-guaranteed to make you smile: http://vimeo.com/61994592