health

The Invader – #18 (pt. 2 – going forward)

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.

I would love to talk about other things…… 🙂

Keep the prayers coming please. I love you all. Thanks.

The Invader – #18 (pt. 1 – what’s been happening)

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.

Life science is real too!

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.

Slow Down a Minute and Reflect – Meditation is GOOD!

Wanna figure something out? Meditate!

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.

Me-ow, me-ow, me-ohm……

Meditation is the key for opening the doors of mysteries. In that state man abstracts himself: in that state man withdraws himself from all outside objects; in that subjective mood he is immersed in the ocean of spiritual life and can unfold the secrets of things-in-themselves.

– ‘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.

Me when I first tried to mediate….

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!

How my panic attacks feel…..

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!

Racing thoughts anyone?

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!!!

The Invader – #8

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

Keep calm & accept Murphy's Law

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

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

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

kid as a doctor

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

 

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

punk rcker with black and purple mohawk/mullet

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

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

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

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

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

The Invader – #7

First off – Happy New Year!

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

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

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

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

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

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

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

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

That’s all for now. 🙂


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

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

The Invader – #6

PART ONE

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

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

blue fright wig

What most wigs look like on me

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

cartoon of a smiling liver

Doesn’t everyone want a happy liver?

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

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

PART TWO

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

giphy

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

keep calm and just wait and see

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


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

thanks a million

Thank you fifty skadillion times over.

It means EVERYTHING to me.

I’ll keep you posted.

Je vous remercie

Happy Thanksgiving.

The Invader – #5

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

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

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

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

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

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

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

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

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

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

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

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

On the mend and NOT going to see Amos Lee

Just a quick update for you:

1) it turned out to be MAJOR surgery and I was in the hospital for three nights.
2) No cancer so far -we’ll know more on Friday- but all kinds of scar tissue and adhesions to various digestive bits along with the mass (the dr. used the term ‘cemented in’…) all of which had to be removed.
3) My mom is fabulous.
4) I am alternating resting and walking. Not in huge amounts of pain, thankfully.
5) Blog will have more knitting in it next week.

April Foolishness and Live Music

So I’m on the mend from all the pneumonia and stuff, my mother has been here and gone – with plans to return on the 6th to help me for the next day’s surgery. So what do I discover?

ON APRIL NINTH – AMOS LEE is performing right here in Huntsville.

Amos Lee

His website where you can hear some of his music

Oh my blessed right knee! I adore AMOS LEE. Hence, the fool that I am, I am actually considering GOING to hear him PLAY. How foolish is this? WAY WAY foolish. Now I know he’ll also be at WorkPlay in B’ham on the 13th, and WorkPlay is one of the best venues I’ve ever seen anybody in….and I will have had a few more days to heal….still it’s probably a bad idea to go, right?

Friends and neighbors, please feel free to tell me how stupid I’m being in the comments. I’m like an addict – I’ve no self control….

(good) Live Music = HAPPINESS

In the last couple of months, I’ve been lucky to see 3 really good live shows: the Soweto Gospel Choir, Ruthie Foster and Shawn Colvin.  Studmuffin came with me to see the Soweto Gospel Choir and Shawn Colvin; both of which took place at the Alys Stephens Center in B’ham. Both shows were terrific performances…but I’m not certain I’ll ever want to go back to that venue…unless it’s for opera or something classical.   It’s a lovely looking place, the acoustics are very good but there’s a very “dead” energy there. The Soweto Gospel Choir had difficulty getting people in the audience to respond to the music with clapping; certainly no one got up to *dance*.  And if they couldn’t do it – NO ONE can.

The Soweto Gospel Choir

We had wonderful seats for the Shawn Colvin concert and she was great, even though she had a cold. Not only can she REALLY sing AND play, but she re-tuned her guitar (a be-yoo-tee-ful Martin) about 5 times to alternate tunings BY EAR.

Shawn Colvin

That was simply (insert yer favorite expletive here) amazing! David Wilcox, another singer-songwriter we are fond of  and uses quite a few alternate tunings, used a nifty tuner attached to his mike stand when we saw him.

The Ruthie Foster show was here in Huntsville at the Merrimack Hall and that was completely delicious. The hall was great and sold out and she was magnificent.

Ruthie Foster

Ruthie Foster is a National TREASURE y’all.

Please please PLEASE go see/hear some live music and soon! Because here’s the equation:

(good) Live Music = HAPPINESS!

################################

Amos Lee

Crossroads Cafe – in Huntsville

Workplay – in Birmingham

Soweto Gospel Choir

Alys Stephens Center – in Birmingham

Shawn Colvin

David Wilcox

Ruthie Foster

Merrimack Hall – in Huntsville

Pneumonia and Google reader

Think back just a few days ago when I was just merely sick with the flu; I’ve since been diagnosed with pneumonia. Not bad enough to slap me into the hospital, but bad enough for me to ask my family to come back early from West Virginia. The giant pills I’ve been taking are working – I *am* better – but I am still coughing BIG.

not my xray, but ya get the idea

So whilst I was unable to sleep lying down because of all the fluid in my lungs, I watched some tv and spent hours on the ‘puter. One would think that this would be a great time to catch up with my Google Reader and read those 1000+ blog posts that have been piling and piling up.

But NO! This did not occur….because, friends and neighbors, I was too sick to knit – even”stupid knitting” was beyond me – much less read and comprehend blog posts. Also, it seems this situation on GR is intimidating me: I haven’t been reading the posts because I am afraid to start reading and get “sucked in” to the ‘puter, and yet I am also afraid to unsubscribe to a single blog to reduce the number of posts.

So I have decided that I must start scheduling GR time and create a new habit, like if I spent 20 – 30 minutes daily reading the newspaper, I will now spend 20 – 30 minutes reading blog posts.

Because of the pnuemonia, the “tennis-ball” removal has been postponed for a couple of weeks; still my mother is coming today because of her non-refundable plane ticket. She’s going to stay here at the “White Trash Hoedown Hotel” – she offered to sleep on the couch. That’d be fine, ‘cept the couch regularly has spring trouble: after several years of regularly been flopped on by giant boychiks (even after they were ****repeatedly****  scolded for doing so), the clips that hold the springs in place have lost their integrity and we can put them back in place which lasts for a time…..but soon there will be a decided sag/ hole to the floor in the middle. So we decided to put her in the Force of Nature’s room. We cleaned it up a bit, got some new sheets, and then Studmuffin decided to shampoo the carpet. This was a good idea because the carpet was dirty. However, this was also a bad idea because for a while there, Bluto (r.i.p.) and Kali peed in that room whenever they got the chance and shampooing the carpet stirred all that smell back up. On top o’ that, my mother has a very keen nose so I dunno what I’m gonna do.  Hospitality ‘r’ us alright……

Wish me luck.  🙂

A milestone is looming and some fluffy bits

My 40th birthday will be Saturday, December 13th.  I’m pondering what this means to me.

I’m pretty sure that I’ve lived more than half my life already – I smoked like a chimney for years (I quit 14 years ago – YAY!) and although I eat very healthily these days and get regular exercise, I remain very fat. Don’t get me wrong – I’d rather be fat than still smoking (I was less fat as a smoker)!

I guess my only true regret is having to deal with these mysterious allergies that have been pestering me for the last year. I wanna be forty and fabulous, but mostly I’m forty and wheezy. Other than that and some peri-menopause woes, I’m pretty good healthwise and that is such a blessing!! I ‘ve known quite a few people in the last 3 years especially who have had cancer (and not everyone has beat the disease unfortunately) and so much of your life goes on hold when you are ill. The daily challenges are SO much harder when your health isn’t good and I am so thankful.

But it could all end tomorrow – and I guess that’s OK too. I would like to see the kids all grown and happily settled into adulthood, but none of us know what tomorrow brings, do we? I’ve got lots of wonderful yarn to knit*…life is good!

*-*-*

tvspot2_22

I’ve been very much into the Stephenie Meyer books over the last year and a half and got a chance to go see the movie, Twilight, last Wednesday.  It’s really good in some places – way better than I expected, and in other bits, it is pretty awful – worse than I expected.  It’s a long movie (2 hours)  but the time just flew by for me, and I will go see it again a few times (rather unusual for me).  I’ve read a good bit about why this particular story is so fascinating – Studmuffin sent me this link to a really nice article about it (http://www.theatlantic.com/doc/print/200812/twilight-vampires ),

but I don’t think any of the things I’ve read have hit on why I find them so good (I won’t bore you with it all now….I’ll wait ’til later).  But there are couple of things that I just love about this Twilight phenomenon that I want to share now:

  • written by a woman who didn’t consider herself a writer with no thought originally of writing a novel (much less four of them)
  • movie directed by a woman – in the top ten of big opening weekends, this is the only female-directed film on the list
  • the protagonist is a young woman and there’s actual action in the story, PLUS during the only shopping scene during the film, she is obviously not into it
  • all the women keep their clothes on; it’s the men who exhibit various degrees of shirtlessness
szenenbild_17jpeg_1400x933
(I think perhaps the restaurant scene is my favorite…….)
If you haven’t read the books, you might not enjoy the movie since there’s so much backstory that really cannot be included.  It’s true that the books are NOT great literature, but the storytelling is VERY good; you really get drawn in by the characters and the story and I do recommend them( the audiobooks are my favorite).  But I gotta say……
z019
Poor Rob Pattinson!
He’s gonna have to deal with being a teen heartthrob forever, and he seems like a pretty decent guy who’s rather serious about acting.  He does quite a fine job in Twilight with a very difficult character, but he’s got a lot of learning to do before he becomes a great actor; it would be a shame if his admittedly very nice looks overshadow his acting for always.  AND I’m sure the female fans will make his life a misery off and on for the rest of his life – I’m sure he had no idea that Twilight was gonna be so freaking huge!  Fortunately, he’s a Brit and that may keep him from some of the crazy excess of egomania that is such a manifestation of Hollywood.
How’s that for fluffy?
—————–
*  Of course, new yarn is always welcome, should anyone wish to give me some (tee hee)…and I will probably post a wishlist (mainly for my mum’s benefit) by the end of the week (not that you’re interested but just in case…)