Author Topic: Cancer, Living With  (Read 10203 times)

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Online brilligtove

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Cancer, Living With
« on: January 19, 2016, 12:57:38 AM »
Hello, folks. This is a long one. It's been a while.

The Energy Budget

In the weeks following the end of radiation and chemo I was an exhausted, bloody mess. Updates will start again now; much has happened, and we’re hitting some milestones.

The first thing to understand is the concept of an energy budget. I learned of it from an article I read some time ago, but I can’t find the source. Imagine that in an average day you have one dollar of energy to spend. Almost everything you do costs a penny. Getting dressed is a penny. Making breakfast. Ablutions. Commuting. Getting your kid ready. Going to a meeting. Dealing with something stressful. Writing an email… Well, you get the picture. If you’re lucky, you still have some spare change at the end of the day, and can do something with that energy, like read a book, or watch a show, or clean up a mess.

In the weeks following November 20th my energy budget got down to about 10¢. Less some days. After getting up from my night chair (I have to stay inclined, not horizontal) my days were very limited. Consider the following activities from any given day:

- Clean my bloody, crusted stoma and radiation damaged mouth – 1¢
- Wash up at sink (facecloth scrub of smelly / dirty areas) – 1¢
- Take a bath – 1¢
- Make a meal – 1¢
- Eat a meal – 1¢
- Clean up after a meal – 1¢
- Get dressed into fresh clothes – 1¢
- Get dressed for the weather outside – 1¢
- Take dogs for a 10 minute walk – 1¢
- Write something like a blog post or email – 1¢

That’s ten 1¢ activities, which seems reasonable enough – except some of them have to be done more than once in a day. My stoma, for example, usually cost 3¢. One dog walk cost another 2¢. Eating took 4¢ (I made and ate breakfast for two cents and had leftovers for lunch for a penny. Dinner, made by Kathleen, was another penny. She cleaned up everything related to those meals.)

You may have noticed that we’re now at 9¢. Some days my stoma needed extra attention, taking the last penny.Those days I didn’t wash up, didn’t get dressed, and didn’t write anything. Other days I could choose to do one of those things.

Of course I could borrow energy from the day to come. Each borrowed penny it would would knock two cents off the next day’s budget. There were some days where the dogs had to just go in the back yard.

By the time we reached mid December my energy budget was closer to 15¢ most days. That provided a tremendous degree of flexibility compared to the 10¢ level, but I still couldn’t do a lot. There was no discretionary spending.

Over Christmas – which was wonderful – I borrowed heavily from future days. Christmas Day at the Treehouse (the name of the house where my daughter and her moms live – not an actual treehouse) meant Boxing Day was an 11¢ day. I went to see Star Wars anyways because it was the only time my brother in law and sister in law could both join us. I didn’t go over budget that day, so the 27th I was back up to 15¢. I spent about 25¢ that day, since we threw a big potluck party for my family. It was awesome. I think we had 20 people in here, between the uncles, aunts, cousins, in laws, friends, and kids.

When you blow the budget by that much it takes a lot longer to recover. Sometime in the first week of January I was getting back up to the 15¢ level again. I have had some serious dips on some days, but most days are still at that 15¢ budget.

This is frustrating, as you might imagine. I have had some dark, unhappy, and miserable days. Being at this level of energy is expected; I’m not surprised or caught off guard by it. I’m still frustrated though. I’d say I’m champing at the bit, but that takes more energy than I have to spare.

I have started to go see my daughter on Monday evenings again, which has been wonderful, and tonight is her first overnight at the Doghouse since all this started, six months ago. We were – we are – all very excited by that! Livé and Diva baked chocolate chip cupcakes (I got to help do the icing). A bath was required after that, to get the batter out of her hair (Livé, not Diva). Then we had delicious cheesy baked noodle pie (Diva’s version of mac and cheese) and watched Underdog.

The ladies are asleep now, and I’ll be following shortly. I’m sure I have borrowed from tomorrow’s budget, but I’m fine with that. I’d spend it all for time with my daughter.

There’s a lot more to cover, of course. A new TEP, lymphedema, some writing, possible plans, scarf tying techniques, baseplate blunders, and upcoming appointments. If you’ve sent me instant messages or emails in the last few weeks and haven't heard back, please bear with me. I’m doing my best to get through them, but it is taking some time.

I hope all of you had a wonderful holiday filled with food, festivities, and family.

Be well.

--bt

P.S. ...



The picture was inspired by a black and white image of Lemmie, Bowie, and Rickman giving the finger to cancer. I thought I'd add my voice.

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Offline The Latinist

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Re: Cancer, Living With
« Reply #1 on: January 19, 2016, 01:02:45 AM »
Thank you for sharing.
I would like to propose...that...it is undesirable to believe in a proposition when there is no ground whatever for supposing it true. — Bertrand Russell

Offline Skulker

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Re: Cancer, Living With
« Reply #2 on: January 19, 2016, 06:56:08 AM »
Thank you for sharing.
^^ This.  I hope your energy bank keeps growing.   Keep on keeping on. :cheers: :tiphat:
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Offline petrolpetal

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Re: Cancer, Living With
« Reply #3 on: January 19, 2016, 08:20:02 AM »
Fuuuuck. That's a lot worse than I realised. At what rate is your energy bank expected to grow, more or less?

I read about the concept of an energy budget when I got into reading a whole lot of memoirs and stuff about Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and Fibromyalgia. I had a student with CFS/ME and one with Fibromyalgia in the same year and that stimulated my interest. They described their process of strategic decision making in their energy 'spending' exactly as you do. They were so brave and so determined and we did everything we could to accommodate them - but it was impossible. The energy deficit chalked up by something like a test or assignment - or even just a reading - could never be made up even though they had supportive families and had abandoned any sort of social life. They both dropped out.   

Online brilligtove

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Re: Cancer, Living With
« Reply #4 on: January 19, 2016, 08:31:49 AM »
There is no clear recovery rate, though patients talk about looking back at the first year and being shocked at a little energy they had. My energy levels vary from $0.10 to $0.20 a day right now. I think I am on a gradual incline, but it's very hard to judge from inside the system.

Gotta run. I have an appointment with my chemo doctor today. More news as events warrant.
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Online brilligtove

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Re: Cancer, Living With
« Reply #5 on: January 19, 2016, 10:44:27 AM »
2016-01-19 Chemo Checkup

I'm at Odette today, for a follow up with my chemo doctor. The driver today is a guy I quite like. He was late though; his earlier pickup was half an hour late, and that messed up my ride and the lady we got on the way. I can understand there being days when you just can't pull it together - but it stills feel inconsiderate.

With the cold, dry air today I need to irrigate and get some water in me before I can talk again. My throat feels tacky inside, which makes me gag, which is no fun for anyone. One of the many tradeoffs that comes with the reconstruction of my airway and esophagus is a much easier path for food to come up. (A good cough from the diaphragm can be enough to make me chew my cud.)

Next week I go for imaging - my first big CT scan, six months after surgery. I'm not expecting them to find anything unpleasant, but the mind does wander.

I'm in a holding cell right now. The resident came by to do the preliminary exam. She was nice, and embarrassed by her cold hands. "I got through chemo," I said. "Cold hands are not going to kill me."

I will see Joanne, my SLP, after the doctor comes through. I had a new TEP put in on Friday, and I'm pretty happy with it. It is a lower pressure valve, which means speaking is easier than before. It takes a lot less muscular work to get volume.

It is quite amazing how powerful an amplifier the normal human vocal apparatus really is. As a very loose analogy, think of a saxophone with a reed at one end and a big tube to resonate and shape the sound. My reed is no more; to make noise I have to vibrate the whole tube. That still takes a lot more energy than a normal voice requires, but the lower pressure valve really helps.

FBAEW
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Offline lonely moa

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Re: Cancer, Living With
« Reply #6 on: January 19, 2016, 11:51:31 AM »
Umm, I understand all too well.  Radio to the neck sucks.

I wish you well.
"Pull the goalie", Malcolm Gladwell.

Offline Crash

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Re: Cancer, Living With
« Reply #7 on: January 19, 2016, 02:01:46 PM »
 
  Sounds like you are in the shit worse than me Brilligtov.  I had a blog about my cancer for a while but I stopped because it makes people uncomfortable talking about it.  The never ending narrative of daily insults to the body makes for painful reading.  I can speak from personal experience that cancer fucks you up. 
  I am six years post allogeneic stem cell transplant for Leukemia. The mortality curve for my particular cytogenetics was so steep I am more than lucky to be alive. Daily improvements are so infinitesimal that you only notice after years.  My big strapping body dissolved during chemotherapy into a profoundly weak condition.  In spite of a lot of pain I can now work about four or five hours now without needing to catch up resting the next day.  I wear a fitbit to measure activity.  I went over ten thousand steps a few weeks back and that was the day I fell on my face and battered myself pretty bad.  I start to stumble after about four hours on my feet.  If I go too far, I need pain meds at night so my feet shut up and let me sleep.  If I take pain meds in the daytime I can walk more but I still pay with more recovery time. 
  All the while there is an anxiety about the cancer coming back.  You are never "cured". 
  I do find cancer biology to be very fascinating. 

Offline petrolpetal

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Re: Cancer, Living With
« Reply #8 on: January 19, 2016, 04:05:13 PM »
 
 you guys are brave and yes, inspiring (like it or not, BT). Speaking for myself, your stories lend me courage - in all fields of life. Not just physiology . You control your life, you don't let the circumstances control it. I like that. I aspire to that.

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Re: Cancer, Living With
« Reply #9 on: February 04, 2016, 05:22:51 PM »
2016-02-04 CT Scandventures

Today we did the tests to see if anything undesirable is growing in what's left of my neck and the surrounding tissues. It's exciting and a little bit anxiety producing.

Here's how the day has gone so far.

0330: Get up to let the dogs out and have a tinkle.

0520: Wake up 10 minutes before my alarm. Have a minor hot flash. When I'm awake at this hour this is normal. Having some acid reflux, so I take my acid reflux pill now (usually taken at 0800 and 2000).

0525: Get up to take care of my blowhole.

0530: Still feeling too warm, but now I also feel chilled. How is that even supposed to work biologically? I climb into bed for a minute to try to get comfortable.

0540: Dress for a walk with the boys, including long johns under my jeans and a t-shirt and Great Big Sea hoodie on top. There is minor enthusiasm. I'm not mom.

0545: Out the door. Back in for poop bags. Out the door. Back in for treats. Out the door. Walking.

0605: Return home. Give the boys breakfast. They normally walk for an hour in the morning with mom, but they know dad walks are short in the morning, long in the evening. Wally does not want his food. I suspect he is pining from mom.

0610: On the road to Sunnybrook.

0613: Back home to get my pipe cleaner, which was in my other coat.

0614: On the road to Sunnybrook.

0640: Into the main parking lot at M wing. My appointment is at room AG256. That's A wing, Ground floor, room 256. I follow the signs to the A wing, go down a floor to G, and find the MRI/CT Reception area.

0645: The reception is closed. I presume they will open at 0700. I'm having an intense powersurge hot flash. Jacket comes off, but my t-shirt is ratty so I don't want to remove my hoodie, and I can't get out of my long johns here.

0655: The heat is unbearable. I walk toward the Odette centre, looking for a bathroom. I don't find any on the way, so end up changing in one of the radiation unit washrooms. Fresh t-shirt from my bag (I carry a spare for goomergencies and goocidents) and long johns into the bag. Sweat shirt off too. I stand in the bathroom in only my underwear for a long moment, cooling off a bit.

0700: Dress again and then head back to the reception area. My alarm goes off, reminding me to take my synthroid pill. My pill is not in my possession: I forgot to bring it.

0703: They are opening the gates, and getting started.

0708: I check in, still sweating. The very ice woman at reception says, "Oh, you're very early." I explain that the instructions on MyChart were clear: if you're having a scan with contrast, show up two hours before your appointment. My appointment is for 0845. "Oh dear, we'll have to fix that," she says. "That's only for abdominal scans." She tells me to take a seat, and she'll see how quickly they can fit me in. As it's first thing, it shouldn't be a big problem.

0710: Someone says, "This area is always to hot!" to the receptionist, who agrees. I am secretly thrilled that my hot flash is not all flash.

0715: They send me over to the nursing station to get prepped for my scan. The very nice nurse gets me set up with an IV, and we chat for a little while about how my cancer was discovered, soda water (they got a fizz maker machine at Christmas), and the dye that they're going to use.

0720: The technician comes to collect me. He gets me ready for the dye by hooking me up to a long, coiled tube. I lie down on the CT scanner, with my head in a specialized headrest. He tells me that I'll be scanned, then dye, then I'll need to put my arms over my head, and we'll be done in 5 minutes. The scanner is a large ring, with a rapidly rotating set of emitters and sensors inside. It feels like it should be a wormhole generator on Stargate. The platform eases me in and out of the ring, asking me to hold my breath each time. This is challenging, since I don't have the physical machinery to seal off my airway (that's a big part of what vocal cords do). Holding your breath using your diaphragm is surprisingly difficult. The machine tells me when to inhale and exhale with icons and recordings. Most are clear and audible. A few are incomprehensible. The tech comes out from behind the glass a few times. First, it's to start the dye pumping. Then it's to tell me to put my arms over my head. I'm sure there was a recorded instruction to do this part, but I couldn't understand it. Then we're done. He takes out the IV and we chat while I clot. They don't have any tape for sensitive skin (latex in the glue is unpleasant) so I just hold the cotton padding on the puncture while we chat.

0730: I'm up and out. I shoulder my backpack and immediately start to bleed from my elbow puncture. I head back to the scanning room, but he's not there. I grab some cotton bandages from the counter and clean up while walking to the bathroom. A few minutes later I'm set, and head out again.

0735: I get to the lobby near the parking. Time to get my hoodie on.

0740: I pay my parking and head home. The traffic is a lot more intense now than it was when I was driving in!

0810: I'm home! Happy wiggles from the boys.

1000: Now I'm sitting in the blue chair with Jake in my lap, waiting for it to be 10:00 so I can eat (have to wait an hour after taking the thyroid meds). I would get up to eat, but I'm falling asleep, and Jake is out cold, so a nap before brunch.

1100: Didn't sleep, though I did doze a bit while reading SGU Forums. Got up to make lunch - tuna melts. Watch Aziz while making and eating lunch.

1200: Take the boys on a long walk, to do some Ingress in parts of the neighbourhood I don't get to that often. My old men and I are well matched for pace at this point: sloooooow.

1330: Home after walks, I return to the blue chair. I'm confident that I'll be snoring if I could still produce that sound. I'll let you imagine me drooling as I sleep instead.

1500: Awaken in the chair - good news, I didn't sleepwalk or get abducted. Start reading SGU again. Respond to a couple threads.

1715: Copy this post from Facebook post this morning, and extend it with up-to-the-minute information.

1719: Hit preview and proofread.

1720: Post.

1721: Discover I have posted to the Star Wars Episode VII thread like a boss.

1722: Post to the correct thread.
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Online brilligtove

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Re: Cancer, Living With
« Reply #10 on: February 04, 2016, 05:32:25 PM »
 
  Sounds like you are in the shit worse than me Brilligtov.  I had a blog about my cancer for a while but I stopped because it makes people uncomfortable talking about it.  The never ending narrative of daily insults to the body makes for painful reading.  I can speak from personal experience that cancer fucks you up. 
  I am six years post allogeneic stem cell transplant for Leukemia. The mortality curve for my particular cytogenetics was so steep I am more than lucky to be alive. Daily improvements are so infinitesimal that you only notice after years.  My big strapping body dissolved during chemotherapy into a profoundly weak condition.  In spite of a lot of pain I can now work about four or five hours now without needing to catch up resting the next day.  I wear a fitbit to measure activity.  I went over ten thousand steps a few weeks back and that was the day I fell on my face and battered myself pretty bad.  I start to stumble after about four hours on my feet.  If I go too far, I need pain meds at night so my feet shut up and let me sleep.  If I take pain meds in the daytime I can walk more but I still pay with more recovery time. 
  All the while there is an anxiety about the cancer coming back.  You are never "cured". 
  I do find cancer biology to be very fascinating.

Hey, Crash. I either missed your post or thought I'd respond later and never did. Sorry for the delay.

It sounds like your cancer is/was a lot more pervasive and invasive than mine has been. I hope you stay cancer free. I am a little anxious about getting the results of my scans, but don't have any reason to believe that they'll find anything.

I'm at a point now where I can do a full day of knowledge work - but generally not two in a row. I've put on weight again, but it's not muscle. :( Hard to build muscle when a workout wrecks you for the next day. I've cut down on my eating again, which will help. (I fell back into old habits when I got my taste buds back in December.)

I was updating every day until the end of my chemo and radiation treatments on Nov 20. The month after that was awful, full of blood and pain, and I didn't have it in me to post updates at the time. In retrospect I should have taken a picture every day and posted that without comment. Live and learn, I guess. Now I'm posting for events and changes. I was getting tired of my own voice; I imagine that a lot of others were too.


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Offline Andrew Clunn

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Re: Cancer, Living With
« Reply #11 on: February 04, 2016, 11:00:13 PM »
Following your recovery is worth the 1¢ per update.
I'm just the victim of my cognitive privilege

Online brilligtove

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Re: Cancer, Living With
« Reply #12 on: February 04, 2016, 11:04:40 PM »
Following your recovery is worth the 1¢ per update.

If only there was a way to transfer that penny from you to me...

;)
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Offline Andrew Clunn

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Re: Cancer, Living With
« Reply #13 on: February 04, 2016, 11:09:26 PM »
Following your recovery is worth the 1¢ per update.

If only there was a way to transfer that penny from you to me...

;)

And thus the new crypto currency "Give a shitcoin" was born.
I'm just the victim of my cognitive privilege

Online brilligtove

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Re: Cancer, Living With
« Reply #14 on: February 04, 2016, 11:16:35 PM »
Following your recovery is worth the 1¢ per update.

If only there was a way to transfer that penny from you to me...

;)

And thus the new crypto currency "Give a shitcoin" was born.

Now you have me laughing in a good way.

Yes yes, I know, snark, yes, but I have to be true to our relationship, right?

Srsly, laughing out loud for reals in my basement. My dogs are concerned for my mental health.
evidence trumps experience | performance over perfection | responsibility – authority = scapegoat | emotions motivate; data doesn't