health

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!

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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…)