Hello friends,
It is with great sadness and regret that I must inform everyone of Helen passing away last night at Huntsville Hospital at around 3:00AM, July 6th. She was surrounded by her family. She will be missed tremendously, and any well wishes, pictures, and condolences are greatly appreciated. We love you all!
– The Oney Family
Dear friends,
so many, many, many of you have reached out to me, asking for an update. I am so grateful for your continued support and loving concern! Thank you.
I have been trying to write a meaningful update for 3 weeks now and so far have just a few lines, because the truth is that I have been very ill and still am quite ill. Please remain hopeful and patient with me. I will write when I can.
Thank you again for all the prayers.
Been in the hospital for a week now. Basically, all was going pretty well, feeling alright enough to do a little gardening even, but then I turned
YELLOW.
Not like just a little bit but all-the-way Marge Simpson kind of yellow.
No es bueno. So they put me in the hospital. Hooray. Nothing better for a new garden than for the gardener to take off for a week or more…..
Fortunately, my liver is not failing, it’s just not draining properly. Last Thursday, I had surgery to install some drains and that was working great until it wasn’t. Tomorrow, I have more surgery to help these drains work better. I hope this works. Otherwise something else will have to be done. I can’t leave the hospital until my liver drainage is close to normal and I’m not yellow anymore.
I’m sorry my writing isn’t my usual – I’m on my tablet and it’s just not very good at this sort of thing!
The prayers have been super fabulous and I’m so grateful. Thank you!
If local people have time and interest, I can have short visits. Huntsville Hospital 7N Oncology floor – room 710. No flowers please – I’d rather you take that money and give it to your favorite charity. Schwuckypoo and the Duke of Curl are taking wonderful care of me.
Until next time…..
So how am I doing really? That’s a bit of a tough question…
So when last y’all heard from our “plucky heroine” (yeah, that’s me), I was about to undergo some targeted radiation and then later a scan. I had all of that and, interestingly enough to me anyway, by the 2nd treatment, I had less pain in my back. I also had almost none of the radiation sickness that I have had with the different radioactive resists that are used for various scans : I did NOT feel like I had the flu. I also didn’t have a huge increase in my fatigue level. This is all good news and I’m really happy about all of that.
I also had the scan and the news was not great – there are more lesions in my lungs and liver. And there’s not a lot that can be done about either.
I was put on another chemotherapy drug that is aimed at stabilizing my cancer – so I don’t have new lesions and that the ones I have don’t get any larger. That’s good, but you’ll notice we have changed from killing off the cancer to stabilizing it. It’s kind of an important distinction.
Another thing that has changed: for the first couple of years of treatment, whatever pain/discomfort I’ve had all came from the treatments, not the cancer itself. This is no longer true – I have intermittent pain in my back and upper abdomen that is caused by the cancer now. Fortunately, I can EASILY manage the pain with over-the-counter Tylenol – that is true for now.
But this new chemo….AISH! This medication is SO TOXIC that I am not to let anyone touch the pills, I must dispose of the empty pill bottles in a specific way; I mean I’m not even supposed to cough or sneeze on anybody because of the stuff I’m taking is now in all my bodily fluids and the toxicity could be bad for them. HOORAY. Also, you take it for 3 weeks in a row, then don’t take it for a week….because the docs don’t want you to die from it.
And yes there are side effects of course! A little tangent here:
So if you’ve been reading these posts for awhile, you’ll know that I tend to get rather unusual side effects. I always try to thoroughly read all the information I get with any new drug I’ve been given to see what may be in store for me. If the side effects I have are even listed, they are in tiny print way at the bottom of the list, but more often than not, they aren’t listed at all. This very personal reaction to drug DOES run in my family so I’m kinda used to it. It does create challenges though….
So yeah , back to the main theme – side effects. Some of the most disgusting ones are back and they have been SO awful I almost decided to stop treatment ENTIRELY. Nope, I won’t tell you what they are, but feel free to let your imagination run wild. 🙂 I’m sure whatever you are imagining is more pleasant and more interesting than what’s actually been happening to me. Now with this drug, I *am* having the usual side effects like are listed in the drug info, so that’s a little new & different. For your enjoyment, here’s a list of the mostly non-disgusting ones:
So I did see some folks at the Cancer Palace today – my labs look good apparently, nice platelet count today. I told the stories about my side effects to some folks there that I hadn’t met before. I thought I was gonna see my doctor or the nurse-practitioner, but not today. I don’t mind that too much; they were lovely people and listened to me and suggested a lower dosage of the TOXIC chemo I’m on, all of which is good. I guess I do mind that these folks have not been through all of this with me and don’t understand what a big deal it is for me to talk to them about stopping the chemo entirely. I mean I’m talking about the months and months of maintenance chemo where I’m at the Cancer Palace for hours at a time every other week to get drug infusions and then having to wear a drug pump for the next couple of days….. I had to explain to them that for me to beat this thing either permanently or for as long as possible – years maybe – I have to be in the right headspace.
The right headspace encourages me to eat better and exercise and make plans and be happy and laugh and try to do some things to serve humanity. When I’m in that headspace I’m not grieving or angry or crying or saying, “Why me?” That head space allows me to be the best of who I am with whatever I have “in the tank” on any given day. It’s the headspace that keeps me working away on a daily basis at the Mount Everest of my neglected correspondence so I don’t get completely overwhelmed at how behind I am. That headspace shows me how to be grateful for every moment and believe that no matter what happens, God is working it out for the highest aim and the greatest purpose. That’s the headspace I want to live in as much as possible, and to be frank, I cannot do it without all the prayers, so I thank you a million times over for them. TRULY. But this last round of chemo with the full dose of the toxic stuff and the resulting really bad side effects, I was not in the right headspace at all for 5 & 6 days at a time – and I do not wanna live like that. Anyway. I hope the new dose will vastly lessen the side effects, especially the disgusting ones.
So I’m generally pretty good; people often tell me how good I look or that I don’t seem sick. That has its own ups and downs for me, but I will say that I am learning something about compassion and humility from all of this. I know how sick I have been and currently am, but to others it doesn’t seem so bad. That’s ‘coz they aren’t me. I’m learning that the vast majority of us have some kind of serious thing going on with us that the rest of the folks have no idea how tough it is, how bad it is, simply because we are not them or inside their heads. Yes, it’s a cliche and yes I’ve known it intellectually for quite some time, but….it’s really, really different when it’s YOU.
Since living with cancer as more of a chronic disease as opposed to a death sentence is what I choose, I am trying to make plans to travel around some more in 2023 than during the most dangerous pandemic times. Very few people will wear masks these days and I always feel like I’m taking calculated risks and try to figure out how to move around outside my home more but not become sicker still with COVID-19 or something else. On top of that, there’s several things I want to do or go to this summer, however I do not know what my health will be like, what I will be like in a month’s time, much less in 3 months. Planning is always a challenge – now it’s harder. When people ask me if I’m gonna do something or participate in something, I end up saying a LOT of “if”.
Whatever is happening with me, I’m not nearly as worried about that as I am about all the folks over in Syria and Turkey dealing with the earthquakes and winter and civil war….. Please say some prayers and feel free to donate wherever you’d like. I’m very fond of Doctors Without Borders, and as a knitter, I love to give through the Yarn Harlot’s Knitters Without Borders/Tricoteuses Sans Frontiers (we’ve raised over a million dollars since 2004!). If I can afford to knit, I can afford to donate. Click on the image below to see how to take part with the knitters, or you can go directly to DWB/MSF https://www.msf.org/
I’m so grateful for your attention, your concern, your prayers. Thank you. Until next time.
I am always surprised at how much time has elapsed between my posts here because I think about posting here just about every day! Oh well, my failings are many. MANY I tell you.
So I made through all the liver treatment follies – yes, it was painful and there seems to be some chronic discomfort that may be permanent. However, I can tolerate it pretty well much of the time, especially since there’s a variety of acetominophen (brand name: Tylenol) is now made that lasts for 12 hours. I can take it at night and not wake up in pain as I used to do with the old formulation.
Now the new and exciting wrinkle (even bad excitement is still exciting fyi) in my “dance” with The Invader is that I seem to have a tumor or lesion in the lower left lobe of my lung. That little jobbie has been causing me pain 24/7 since August. I’m grateful for the pain in this instance because it was that particular pain that led the docs to look at my scans in a different way and discover this thing.
This little jobbie is gonna get zapped by radiation – a treatment I haven’t had before now. I’m a little bit apprehensive about it because I’ve had regular reactions before to very low levels of radioactivity (makes me feel like I’ve got the flu for about a week and a half) and this will be quite a bit more in strength. Some fairly serious fatigue is to be expected.:::sigh:::But radioactive zapping is THE way forward in this case – surgery is not an option apparently, which is fine by me. I have had PLENTY of surgery.
Moving forward, I’ve had the special “4D” CAT scan; one needs this because unlike tumors or lesions elsewhere on the body which can be kept completely still, little jobbies like mine in the lung regularly move because of breathing. Breathing is something I am completely PRO – I wanna keep doing that as long as possible! Another aspect of this kind of treatment is that I have gotten my very first tattoos – yep, I now have 3 dots about the size of a sesame seed – permanently inked on my torso so that they can position and aim the radioactive beam properly. Oddly enough I have thought about getting a tattoo ever since I was a little girl, back when it was not terribly common especially for women, but I sort of decided about 15 years ago that I was probably decorated “enough” with surgical scars (not nearly as artistic as tattoos, but a lot harder to obtain) – and that was before several surgeries that have happened since. More recently, I decided that -when I beat cancer and they remove my chemo port – I will get a beautiful, artistic tattoo to cover the scar, but now that won’t be my 1st tattoo.
I believe I’ll be getting zapped 4 times – 2 times next week. So it looks like I’ll be in bed for Thanksgiving…and I’ll be grateful.
Y’all, your prayers have been absolutely AMAZING. For the last 20 years or so, I’ve been lucky enough to have 5 best friends. In August, one of them died unexpectedly, and another one of my BFFs received a very very serious diagnosis in September. I know with every fiber of my being, without your prayers I would be completely unable to cope. I thank you all with such gratitude. You just don’t know and there don’t seem to be words that can convey how big, how wide, how deep, how profound my thanks for your prayers and concern for me……….
https://tenor.com/embed.jsUntil next time. 🙂
Hey y’all!
Just a heads up – I’m gonna be having liver treatments – Y90 and the microwave melonballer again – this time on the opposite side from 2 years ago. It’s really a miracle it can be attempted at all and I will be going in tomorrow for the 1st one. Then 2 weeks later I go in for the next one, then 2 weeks after that I receive the last treatment. Each time I spend a day in the hospital, but do get to go home. It’s more like laproscopic surgery as opposed to “big incision” surgery as I call it, but these all do take place under general anesthesia each time. I have done well the dozen or so times I’ve gone “under”, but it is always a risk.
The clinical trials are out for now, especially if I get a good result from these procedures. This is because the clinical trials have to show progress against the disease; if my cancer is undetectable for awhile, months or even a year, if I’m taking the trial drug, how does anyone know if it is effective? So I’ll have to be demonstrably unwell to join any clinical trial.
All of that being said, the liver treatments are more dangerous this time – my blood vessels are pretty beat up because I’ve had a lot of chemo over quite a long time. And always, cancer treatment dances along the line of toxicity. If the dosages are wrong for the Y90, my liver could fail entirely, though I am confident that that won’t happen. Still, it’s possible.
I have enjoyed time off from chemo – I ain’t gonna lie. My hair is growing back and my singing voice is better and I generally feel better, though I do get various lingering side effects at seemingly random times. Life is full of surprises, n’est-ce pas?
Thank you all again again again for the marvelous prayers. I can feel them and I am indebted to each and every one of you.
So last Monday (May 16) I went in to get treatment and 2 things happened: my platelet count was too low again for me to receive treatment and I got to consult with my oncologist. I had had another genomic blood assay recently, and the results were NOT great.
This isn’t super awful news in that the genomic blood assay can detect changes in the cancer quite a bit before those changes show up in the other scans (CAT or PET scans), so my medical team can make decisions about going forward sooner and that’s really good. But it does mean that, generally speaking, at this point I’ve used up the other treatments for my kind of cancer (surgery, radiation, chemotherapy) and now it’s time to try clinical trials. This is rather a roll of the dice for a number of reasons: depending on what phase (1, 2 or 3) of the trial I might be able to get into, where the trial is located (it could be in South Dakota for example) and we would have to decide if I could move there – if we could afford it or if I could manage without any support system there, and so on.
The different phases of clinical trials I think are important to understand too, but let me be clear – what I’m writing is my own understanding and I absolutely could be wrong; I don’t know everything and I am surely not a medical professional!
But, as I think it could be useful to those reading this, this is what I currently understand: a phase 1 trial is the most experimental of the three. The drug being studied has not been proven in any way to be beneficial to humans (there may have been prior animal studies that indicate benefit) and participants do not know if they are actually receiving the drug being studied or a placebo (double blind study). A phase 2 trial is where a drug has shown some kind of benefit in phase 1 trials and the phase 2 is more targeted – perhaps to a specific kind of cancer or stage of cancer, or people of a certain age range, or those who have had certain environmental exposures, or maybe 2 drugs are used in combination, etc. Lots of different variables may be included or excluded to find out if a drug is truly useful, but, just like in phase 1 trials, participants do not know if they are receiving the drug or a placebo instead.
A phase 3 trial would be the best I could hope to get, in that the drug or drugs in such a trial have proven benefit and are being measured for the “standard of care” – participants are certain to receive the drug (or drugs) being studied, but these trials figure out doses and/or procedures (such as the drug being trialed needs to be given in conjunction with another drug, or alternated with another drug, again many different variables) so that the drug, once approved for use, can be prescribed.
Taking part in a clinical trial might mean that I’d have a whole new slate of uncomfortable, and/or embarrassing, and/or possibly damaging/toxic side effects with no guarantee of benefit to me – meaning killing my cancer/extending my life. The thought of more new and awful side effects really kind of terrifies me. But that’s the gamble of it all -there’s the chance I could receive a drug that works wonderfully for me. I guess what really appeals to me about participating in a clinical trial, or even more than one trial, is the opportunity to possibly help someone else. To assist in scientific inquiry that may mean somebody else, maybe lots of somebodies, doesn’t have terrible side effects or is able to manage their cancer like a chronic disease instead of a death sentence, or – the “Holy Grail” – they can be rid of the disease entirely. Now that’s a gamble I feel is worth taking.
No, none of the docs have given me a new “expiration date” so far. They don’t know and in some ways, I like that there’s no timeline here. Makes me feel more like everyone else – no one knows the hour of their own death. And really, I do have a pretty strong feeling – based on nothing more than what my gut says – that I’ve still got several more “good” years ahead of me, perhaps as many as 10 years. I don’t feel like I’m entering into any kind of final phase. No matter what happens, live or die, everything will be alright.
So how am I doing? Believe me, I’m so very fortunate to have so many people who care for me and everyone wants to know how I am doing and what’s ahead. I am so very, very. very grateful to absolutely everyone who has asked how I am and said nice things or prayed for me over the years – I am often overwhelmed by the depth of caring shown by everyone (and I’m so so so far behind in my correspondence in communicating my gratitude, well it’s scandalous. Please forgive me if I haven’t gotten back to you). Most all the time I feel very unworthy of such love and care from so many….grateful is such a puny word and doesn’t communicate how hugely in everyone’s debt I feel. Thank you all. Really. Truly.
For now, the biggest drag on me is having to tell others about my “bad news”! I gotta tell you – it’s pretty depressing to tell so many friends and family that the news isn’t good; I end up comforting people over and over again – it can be quite exhausting and some days, I’m just not up to it. I hate making my mother, my husband, my children cry, but I have to be upfront and honest about what’s going on. I have learned that giving bad news and helping others cope is a big part of the “mental game” of having a serious illness, and just like treatment and side effects, ya gotta learn how to deal with it. I’m stumbling along as best I can, hopefully with gratitude, humor and a positive attitude.
Keep the prayers coming please. I love you all. Thanks.
Yeah, so it’s been FIVE MONTHS since I wrote anything here. I do apologize. I have thought of it many, many times during this period and I haven’t been able to put my thoughts together in any kind of coherent way. Really I am sorry – I know it has caused quite a bit of worry on the part of some of my friends and family.
One thing I can absolutely promise is that Part Two of this post will be published in a few days and you won’t have to wait months this time – I can promise that because I have already written it and electronically scheduled its release.
So when last I wrote, I had to put my beloved old cat, my beautiful girlie Kali, down. I hope to write about her at some point in the future, when I feel up to it. I wanna tell everyone how great she was. On that same day however, December 20th, 2021, I started “full on” chemotherapy again. My numbers had been creeping up (in the wrong direction) for several months and had recently jumped up a concerning amount so the decision was made that I would go from the “maintenance chemotherapy” I had been on for quite a while (every other week, going in for a several hour infusion on a Monday, wearing a pump for the next 2 days and then getting it disconnected on Wednesday. VERY time consuming) to “full” chemotherapy (similar routine, but more drugs and higher dosages). My oncologist said, rather optimistically as it turns out, to me and Studmuffin that I probably wouldn’t notice that much of a difference.
Well, the side effects began almost immediately – really uncomfortable, disgusting, very inconvenient and some downright nasty digestive things happened. I won’t tell you the worst things – it’s too depressing and, though I don’t have lots of personal dignity, I do have a smidgen…… Of course the “usual” things happened – headaches, fatigue, nausea, inability to concentrate, skin peeling off my hands and feet, neuropathy/numbness alternating with pain in my fingers and toes, EVERYTHING tastes like medicine all the time, big changes in my singing voice, all my hair falling out…
Having my hair fall out was much easier the second time! I hadn’t had my hair cut since it grew back in, so it was quite long – I could put it in a small ponytail. As soon as I realized it was falling out again, I went to the cheapo haircut place my family generally goes to and had them cut almost all of it off. I had it done because I’ve learned that when it’s long and falling out like crazy, when you take a shower, the hair sticks to you all over and it takes a good long while to rinse it all off. Plus, the first time, I had zero idea of how to tie a scarf on my head and not have it look a complete mess. Praise God for Black women on YouTube (well in general anyway!) – so many great tutorials helped me tremendously. I’m not great at it by any means, but at least I’m not inspiring LAUGHTER or pity.
Two new side effects I can tell you about were violent nausea at the smell of meat/cooked foods and massive mouth soreness and blisters on the inside of my mouth. The first one was very hard because I really was not hungry for nearly 5 months and I had to force myself to eat. Especially the smell of meat of all kinds made me gag, and, even when something seemed the least bit appetizing, by the time I had cooked it (I’m still the main cook for my family even while I’m sick), I no longer wanted it. Yes, I’m still fat (I’d still have to lose 70+ pounds to be of “normal” weight) but that kind of weight loss is very hard on the body and despite my best efforts, regular smoothies and very good vitamins, I was in danger of becoming malnourished again. No good for healing for sure.
The mouth soreness and blisters are hard because it limits what you can eat quite a bit, I often looked like someone had taken a poke a me (fat, bleeding lips that HURT) and I cannot use regular toothpaste or a regular toothbrush to brush my teeth even now. I now own many, many tubes of lip balm and a couple of baby toothbrushes and baby toothpastes which has helped.
Along with this, is all the COVID stuff. I have tried to abide as much as possible by the best advice from health authorities (not that they have made themselves very clear to understand…but that’s a whole ‘nother rant), while still trying to lead as normal a life as I can – so I’ve spent a lot of time at home as well as trying to figure out what is more or less risky to do (travel by car or by plane?). BUT I swear that Studmuffin must have slept through everyone of his life science classes (he’s an engineer) because he really does not seem to understand much about biology, medicine and ZIP about immunology! His politics and mine have always been very different but his, it seems to me, have gotten seriously weird over the last 7 or 8 years…..to the point where I’m pretty sure he would not have gotten vaccinated much less received booster shots if I hadn’t insisted – as if a virus cares at all about anybody’s political stances. I could go on and on about the importance of mRNA vaccines and just how amazingly good the COVID vaccines are (hint: d*mn near miraculous). If you don’t believe me, Google it & read up on the polio vaccine’s history.
And his great reluctance to wear masks I find very hard to understand. I have reminded him on several occasions that surgeons and anesthesiologists and surgical nurses all wear masks in the operating theater in hospitals for the last 125 years or so because they WORK, not because the medical professionals are trying to impress the patient (who is asleep for almost the entire time) with some kind of reassuring performance. As I have said to many people in person, I have sacrificed a lot to receive cancer treatment, and if I’m gonna die, I wanna die from cancer, not from a virus. So even though he loves me tremendously and I know it, and he has taken magnificent care of me throughout this whole time, we have had a number of disagreements about how to keep me as safe as possible during the pandemic, which is kind of stressful as you might imagine.
So it’s been pretty rough and then, one Monday I went in to start that week’s treatment. They drew blood for the labs as usual, but I didn’t get treatment that week because my platelet count was too low. Apparently, this happens fairly frequently to those undergoing treatment, but it hadn’t yet happened to me. It would mess up my monthly schedule but I was fine with not getting treatment that week.
The next week I go in, platelet count was up, I got treatment, and then scheduling for next time, I was told I was gonna meet with the oncologist. I really like and respect him, so groovy. Studmuffin came with me because the side effects were getting worse and worse, to the point where Studmuffin said that if I started walking around like a zombie again, he was gonna take me to the hospital (referencing back to the time I was having a toxic reaction to a previous chemo protocol, which landed me in the hospital for 2 weeks in 2020). We go in and I start telling the oncologist how severe the side effects were. Now I had been telling him/the nurse-practioner/the nurse all along since December about my side effects but downplaying their severity for two reasons: 1) I want to KILL the CANCER, I expect chemo to be difficult, and I will take as much as I can stand (which is a lot), and 2) I’m from New England, where there’s quite a tradition of not telling everyone (ok anyone, if I’m being honest) how truly bad things are. Of course I’m FABULOUS at complaining, but it’s kind of an art to complaining about stuff and yet minimizing things as well. Ask other New Englanders and most of them will agree it’s a thing we do.
So I had been trying to minimize my sufferings at home so Studmuffin and the Duke of Curl wouldn’t be too worried. But I was getting to my “no more chemo” point and I had to tell the doc. As I was telling him, his eyes got bigger and bigger and bigger – he was kinda gobsmacked at how bad things were and immediately dialed back the chemo by 50%. I did ask him if I could have two more cycles of full treatments – I thought I could stand that much more – and he said no. He did say that my numbers were trending in the right direction and that if all went well, I might get to have a 3 month drug holiday over the summer. Hooray!
So six weeks ago, my treatments got dialed back and I started getting hungry again and being able to eat meat and fewer blisters in the mouth and I was pretty glad. So that’s what’s been happening and you’re pretty much caught up!.
Part two in a couple of days…..
Many many many thanks for all the love and concern, and the prayers mean EVERYTHING to me.
Kali 2002/2003 – Dec. 20, 2021
It’s been on the way for a while…..but still – they leave such a big hole when they go.
I’ll write more in a few days. I love you so so much sweet girl.
… good news. I guess it is. Still having chemo every other week – cancer treatment is STILL no fun, side effects are yucky but it has all become another part of “the routine”, and thankfully, I’m still waking up every day. It seems like I’ll continue to do that for the foreseeable future so I’m good-ish.
Thanking everyone MIGHTILY for the prayers. I can feel them – they are MARVELOUS. Thank you a million times over.
Since I’ve not got loads of exciting/disgusting tales of my health to tell you about, I’m gonna resurrect something I used to do here on de blog years ago (for this week anyway…..), and that is Ten for Tuesday.
It’s a list. On different topics. Happens weekly.
This week’s Ten for Tuesday is ::::drum roll:::::::
Top 10 Albums I Can Listen to Over and Over Without Getting Sick Of Them
In no particular order, TODAY they are:
Honorable Mentions –
I realize that I could write at LEAST a paragraph about each one of these albums….and you have a life, so I won’t do it today. I may decide to string this Ten for Tuesday list out over a bunch of weeks by perhaps writing about 2 or 3 of these on ensuing Tuesdays…..and I *know* I’ve left out so many artists and albums that I consider essential. Heck, there’s not even a single Beatles album in the top ten or the honorable mentions list and that just cannot be right, can it? no Prince, no Elvis Costello, no Sam Cooke, no Cheap Trick, no Shawn Colvin, no Temptations, no Queen Latifah, no David Bowie, no Freddie King, no Robyn, no Missy Elliot, no Donny Hathaway, no Carole King, no Cure, no Memphis Slim, no Joe Jackson, no Eva Cassidy, no Rolling Stones, no Luther Vandross, no Whitney, no Disney, neither James Taylor nor Sandy Denny…..so so so many are missing, it’s criminal.
Suffice it to say that I have listened to each one of these albums listed above at LEAST 20 times and some of them many more times than that – to the point that I know every, beat, every word, every note on the silly things. Yes, I have spent ridiculous amount of time listening to music, and there were lots of times I only listened and did nothing else. So there. A lot of these are available on Spotify – not all of them unfortunately – so I guess I’ll make a playlist to share with you.
And the Honorable Mentions get a Spotify playlist too –
If you feel like commenting, I’d love to know if any of these are favorites of yours, or what your list would have on it….Love your comments!!!
I was updating an old post today ( Yahoo!! I’m a Baha’i!: Staying Motivated ) and I wanted to add something about what a great and useful tool meditation is. As I was writing, I realized I need to write a separate post about this, ‘cos I just could not be brief about this subject.
– ‘Abdu’l-Baha, #54, Paris Talks
Though I’ve been a Baha’i almost my whole life, I didn’t spend hardly any time specifically on reflecting or meditating for my first 30 years or so. As I’ve gotten older, I realize that I did do both things kind of unconsciously as I spent a lot of time by myself in the woods surrounding the house I grew up in, or riding my bicycle (I had a 5 mile long paper route for a few years), or trying to fall asleep (insomnia started back when I was 3).
My real journey towards meditation began about 25 years ago, I was staying with a friend, it was bedtime and she wanted to share a guided meditation recording that she really liked. She said it wasn’t that long – maybe 15 to 20 minutes long and I thought it sounded like a good idea. She started it up and after about 2 minutes, I couldn’t be still. My nose itched, my foot fell asleep, I had to change my sitting position, and on and on. After about 10 minutes, I ashamedly asked my friend to stop the recording because I couldn’t concentrate hardly at all on what the fella on the recording was saying.
I was really bothered by this inability of mine – I didn’t seem to have difficulty focusing when Scriptures or prayers from any religion were being said or read – why couldn’t I meditate? I asked my friend what she would recommend and she started talking about movement meditation – like taking a walk and focusing on a single thing – like a word or how the breeze is blowing on your face or the color of the grass. I live across the street from a school that has a track oval – perfect! I didn’t have to pay attention to where I was going – the oval track took care of that – and I could just walk and try to focus. I won’t lie and say it was easy because I had never worked on training my mind in this way. Part of my insomnia problem has been my my mind racing with thoughts and my inability to slow it down. But even though it was difficult at first, eventually I found a rhythm that worked. Then I started using short guided meditation recordings, eventually moving to longer ones. I started experimenting with binaural beats and for me, that really helped train my brain (there’s loads of them on YouTube btw). Eventually, I got to the point where I could sit in silence, even in a room of people talking and I can successfully meditate.
Learning to meditate and doing it on a daily basis has been EXTREMELY helpful in many ways that I didn’t expect. Specifically, the first MRI I ever had was 20 years ago and I was stuffed into a very loud machine. When I say stuffed, I mean it: I was essentially the same diameter as the machine’s opening. It was super loud compared to the MRI machines they have now, but I decided to meditate and I just floated off someplace. I didn’t get anxious or feel closed in; I got to the state of meditation where my hands do this tingling thing – it’s hard to describe but the hand-tingling is usually accompanied by a sort of state of ecstasy. Anyway, it’s groovy and I realized afterward that if I hadn’t been able to meditate during that MRI, I would’ve had a panic attack!
Since my cancer diagnosis 2 years ago, I’m regularly put inside a loud machine for a scan. I’m smaller and the machines’ openings are bigger so I no longer have the stuffing sensation, but I’m still grateful for the ability to meditate. Instead of becoming impatient with all the “hurry up and wait” of medical treatments and appointments, IF I manage to remember that I have the ability to meditate, I no longer feel like I’m wasting whatever precious time I have left to live in this world. No, I’m no saint and I still get impatient frequently, but remembering to meditate really helps me with patience.
Another wonderful thing: it has calmed my “brain rats” down tremendously, which has greatly helped me in just about every thing I have attempted to do in the last 20 years. Brain rats are all those voices in my head that tell me how unworthy I am, how unskilled I am, how useless and awful I am, all the thoughts about how I shouldn’t bother even to try, have been vastly muted through meditation. Heck, it’s been way more useful than medication in this regard…and it’s FREE!
The last thing I want to share (though there are certainly many more ways that meditation has been beneficial to me – I *do* want this post to end fairly soon….) I have gained so many insights that I am absolutely certain are not the product of my own thought process. For example, recently (summer 2021), I was asked to sing at a wedding reception and I had no clue at all what to sing and there was NO time to learn anything new. While I was meditating, I was reminded of 2 short songs/prayers (in languages I don’t actually speak) that I had learned probably 15 years ago that would be suitable. In brief, it turns out, the groom – whom I don’t know very well – has a special attachment to one of the songs and was truly moved to hear it. This would not have happened without meditation. Thank you Baha’u’llah!
Anyone wanting to learn how to use meditation and prayer to gain insights and solve problems, I encourage you to go to this link which describes the 5 steps in using prayer to solve problems.
Many times when meditating I fall asleep – this has become a running joke in my family, that mediation time is actually nap time. Well so what? I probably need the sleep and I know I need the meditation. Let ’em laugh – I know what meditation does for me! Maybe you’d like to try it. 🙂
I of course always love to read your comments and maybe you can tell me about your own experience with meditation.
AND THANKS FOR ALL THE PRAYERS!!!
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)-
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. 🙂
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.
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…….
Hey y’all! How’s it goin? Happy new year and all. Hope nobody’s gotten COVID…….
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“.
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…..
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.
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.
****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.
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.
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…..
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.
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!
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.
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.
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.
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’.
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.
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.
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…).
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!!!
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.
Knitting & whingeing in Abalama-ding-dong 