cancer

The Invader – #5

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

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

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

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

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

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

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

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

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

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

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

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

The Invader – update #4

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

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

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

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

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

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

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

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

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

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

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

The Invader – Update #3

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

 

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

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

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

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

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

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

Yes, he was cool.

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

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

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

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

 

 

 

 

 

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

The Invader – update #2

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

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

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

No felines were involved in my CT scan…

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

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

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

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

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

 

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

 

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

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

I have “it”; “it” doesn’t have me.

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

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

Two things:

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

 

 

 

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

 

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

Here’s the advice I *am* following:

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

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

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


Just a few more particulars……

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

 

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