Saturday, August 31, 2013

Identification Please

Every time I go to Dana Farber for anything that isn't a radiation treatment, they slap on a wrist band. Then every staff member who comes in contact with me checks my wrist band to make sure they're doing the right thing to the right patient.

This is my collection of wrist bands.

As far as I can tell, they never did anything wrong to me.

They did save my life.

Thursday, August 29, 2013

First Date

Today I went on a date with Wonderful Wife!

We went to a movie ("Closed Circuit") late morning, in time to be home to walk to school to retrieve The Progeny.

I haven't really been out in public since a few weeks into treatment. Other then trips to Dana Farber, I've really only been out for neighborhood walks and some brief errands. I've been getting cabin fever lately and it felt really good to go on a "normal" outing.

I've felt pretty limited by the fact that I have to spit every few minutes. I have a Starbucks cup that I turned into a smaller spit cup than the cocktail shaker I normally use, but it still feels awkward to carry both a bottle of rinse and a spit cup.

On some days, now, the mucous is decreased enough that I can go 10-15 minutes without spitting. And I figured a daytime movie on Thursday would not be crowded. And the theater is dark, so people probably wouldn't notice. I was right. I felt comfortable.

Don't tell my boss, though!

Actually, my recent improvements do have me thinking about returning to work and wondering when might be the right time. Things still change from day to day, but I think I might be able to show my face at work within a couple of weeks, at least for brief periods.

Spitting and eating are the two main obstacles. Eating I can take care of - I can easily feed in one of the small rooms we use for conference calls. The spitting is more of a problem since I work in an open plan office.

I have already started to re-engage via email. I'll continue to ramp that up in the near term. There are some new technologies that my team was starting to use when I vanished in early summer. I can start to spend time learning about those, too.

Today was a good day. The good days are definitely starting to outnumber the bad.

Oh, the movie was pretty good. Although strangely titled and marketed with ads that show lots of surveillance camera footage. Because while there are a few surveillance camera shots used in the movie, video surveillance plays absolutely no part in the plot.

Wednesday, August 28, 2013

I Can Has Cheezburger?

Major milestone achieved today: I put some real food in my mouth and swallowed it.

I had tried a bite of watermelon a few days ago but it didn't really count because I ended up spitting out the solids after I got all the juice.

Yesterday we had a follow-up appointment with Doctor Chemo. That went pretty well. We revisited all of the meds I'm still on: her advice was to stay on all of them but perhaps not for much longer. We meet again in a little less than two weeks.

Then we met with the Speech and Swallow Therapist. We've met with them a couple of times before and they gave a me a lot of exercises that I was supposed to do all along. Unfortunately, my repeated sinus infections and mucositis on my tongue kept me from doing many of them. Swallowing water or things like pudding was too gross because of the sinus infection mucous I would swallow along with it. And tongue stretching exercises were too painful due to the mucositis (and still are).

Instead of lecturing me for not doing the exercises, the therapist was encouraging and helpful in figuring out things I might try to eat and drink now that I'm feeling better. Especially with the sinus infection on its way out. While in her office I swallowed some water and it wasn't bad. In fact, it felt good on my throat. I also ate a couple of bites of apple sauce. As I've mentioned, the granularity of it is a bit unpleasant but she encouraged me to push through that.

Her words? "If it doesn't make you vomit and it doesn't make smoke come out your ears, keep eating it."

I suddenly realized while talking with her that between me and that cheeseburger I crave there are a lot of baby steps. And the time is now to start taking them.

So today I took a few sips of apple juice. That hurt the mucositis - apple juice must be more acidic than I expected. But bottled water went down pretty well. No mouth pain and only a little bit of swallowing pain. Then I tried some baby food pears. Those were alright, too.

The most encouraging part was that the horrible added taste that started with the second chemotherapy cycle appears to be gone. Both the juice and the pears tasted pretty normal. I even tried a little taste of alfredo sauce when the family was eating dinner and it tasted like...alfredo sauce!

I'm very excited. This is a huge psychological milestone for me.

I'll stick with liquid and smooth stuff for a few days. The next step will be to eat something that requires chewing.

I have been craving food more and more the past week or so. Wonderful Wife's parents are still with us and mother-in-law is a wonderful cook. Everything she prepares smells delicious. Soon I expect to be able to enjoy eating it! Yeah!

Monday, August 26, 2013

Houston, We Have Motility

At least a measure of it, anyway.

The regimen that Doctor Stoole gave me last Wednesday is doing its job. I've achieved a modicum of regularity. Not like your regular regularity, but a lot better than I had for the three weeks prior.

That's allowing me to get more food in, which is giving me more energy.

Oh, and the antibiotic is also doing its job and the sinus infection seems to be on the wane. The radiation-induced mucous is subsiding: much better some days (like yesterday), then returns the next (today) but not as bad.

Last night I got up a couple of times in the middle of the night to clear mucous and there just wasn't very much. I was nonplussed. That's all there is?

Remember there's a chain going on here: the sinus infection and radiation-induced mucous are causing mucositis on my tongue, which is surprisingly painful. For that I take oxycodone (albeit a pretty low dose), which in turn causes constipation, which in turn has made it difficult to eat. I had only lost about 8 pounds through most of treatment. Then the constipation hit and I've now lost 20 pounds.

I put food in my mouth today for the first time since the beginning of July. A small piece of watermelon. I'm pleased to report that it didn't taste horrible! But I'm used to having only liquid in my mouth for all that time (buffered saline rinse) so food feels strange. Even the little bit of granularity in watermelon is unpleasant. I'm going to have to start with smooth foods like pudding or maybe ice cream if the dairy doesn't cause too much mucous production.

I'm craving food more every day. Everything smells and looks good.

What I really want is a cheeseburger. That's probably just about that last thing I'll be able to eat as I relearn how.

But before I get there, I've still got to get this sinus infection completely cured. At the moment I can't swallow liquid or food without also swallowing some snot, and that is, you guessed it, unpleasant: it makes me gag.

Remember that "bottom rung" thing where mucous very deep in my throat would send me into panicky coughing and gagging fits? I've discovered a counterintuitive solution that works sometimes: swallow some mucous. It's weird, but it changes the sensation on that bottom rung and takes away the worst part of the coughing impulse. For some reason in that particular situation swallowing mucous doesn't make me gag.

So, things are noticeably better than they were a week ago.

I've mentioned before that the watchword during this recovery period is "patience". I can already feel how slow it's going to feel. Or, I guess more accurately, it feels very slow (already).

Thursday, August 22, 2013

The Scoop on the Poop and the Goop

It's been very frustrating for me that two weeks after treatment, where I should be shedding problems and focusing on recovery, I still have these two lingering issues that are making things worse instead of better: constipation and yet another sinus infection (number four since diagnosis for those keeping score at home).

Wonderful Wife and I felt like we had come to a dead end trying to address the constipation issue with our team at Dana Farber. They've been a fantastic cancer fighting team and I'm very grateful to them for saving my life but this issue felt like it had people befuddled and out of ideas.

Essentially it has been a story of too many cooks in the kitchen. Both of my doctors, the nurse practitioners and many nurses have all put forth ideas and suggestions but we tried everything suggested in various combinations and no one was able to provide us with a consistent plan to follow.

What we had arrived at was using a colon cleansing routine (homemade GoLyghtly) that would produce more output than anything else we had tried. The main problem with the constipation was that it would eventually compress my stomach so much that I could no longer feed or take medicine. The cleansings removed some material from my bowels, though clearly not everything. But it made room to get food and medicine in again for a few days. We sensed, however that we were falling behind and not making enough total room.

Monday night I was expressing frustration with the process to my mother when she had the brilliant idea of getting a different opinion elsewhere. So we called my primary care doctor to ask for referrals to gastroenterologists. After a couple tries, we had a next day appointment (which was today at 1:00) with young Doctor Stoole.

We got the impression Doctor Stoole is a fairly new addition to the practice - he doesn't have a photo on the web site yet - but we felt very comfortable with his knowledge. Yesterday I spent time documenting on a single page the entire experience since July 27, which is the last day I produced anything solid in the intestinal department. He found the documentation very helpful.

He performed a physical exam and rectal exam. His manipulation of my abdomen from the outside was fairly aggressive. I've actually had a lot of burbling this evening and it feels like just that manipulation may have had some beneficial effect.

In the end he came up with a very simple three-component regimen to follow for the next week at least.

  • Colace (stool softener) 3 times per day
  • Miralax (laxative) 2 times per day
  • Senna (herbal laxative) 1 full dose once per day at bedtime

We have used all of those medications but not in this specific combination or this consistently.

Time to update the Tracker Keeper again.

I'm very happy that we reached out for additional, specialized help. I'm optimistic about the plan. The fact I'm still taking opioids for pain could throw a wrench in things but I'm hoping for the best. And I'm also hoping that I'm not going to need those opioids much longer; for that we progress to the Goop portion of the story.

Welcome to the extended team, Doctor Stoole.

I wrote last week that I suspected either the previous sinus infection was returning or a new one had arrived. Doctor Chemo had already prescribed Levofloxacin in case the infection came to fruition. I started taking it last week but was interrupted by another "full stomach" episode.

It became a little more critical in the past two days as the radiation-induced mucous actually has started to diminish. That would be a great thing, except it leaves the sinusitis mucous, which is thicker and sticker, without the diluting effects of the radiation mucous.

Messed up, eh? That I wish I still had the radiation mucous?

We went to see my ENT, Doctor B, on Monday and, as he always does, he confirmed in two seconds that I do in fact have another infection. For some reason at the Farber my doctors never seem to want to look that closely for pus in the throat and not to make definitive statements about whether an infection is present or not. That's been frustrating.

Anyway, I do have a sinus infection and Doctor B was fine with the antibiotic I already have on hand. It's only a one-week course and could show results in just a few days. That would be most welcome.

I may be being my usually overly optimistic self, but it feels like getting rid of these two annoyances would really let me focus on recovery proper - regaining weight and strength and energy.

Tuesday, August 20, 2013

Oral Optimism

Reader Anonymous commented on "Tracker Keeper Evolution" inquiring about my teeth.

The answer is I have no idea how they are holding up. I know this treatment can be very rough on them, such that blogs by other patients with poor dental health report their dentist recommended that most teeth be pulled before treatment even begins because they won't survive it. Others who had pretty healthy teeth before treatment still report as many as 8-10 new cavities in the year following treatment.

Of course it depends on the exact radiation field, chemotherapy regimen, dose and duration in addition to the patient's starting dental health.

I was fitted for fluoride trays that I was supposed to fill with fluoride gel every night and soak my teeth for a minute and then not rinse for 30 minutes. I did that for maybe a week and a half. Then it became too painful because the tray edges cut into my gums. For a week or so after that I painted the fluoride on with a Q-tip, but that became too painful as well as the gum tissue got even more sensitive. After that point, so for roughly the past four weeks, I have only brushed with no toothpaste. At least once every day at bedtime and I try to brush in the morning as well.

Everything we read says that the mouth rinse of water with salt and baking soda is beneficial for the teeth and helps protect them during treatment. I've certainly been doing a lot of that. I go through about a gallon of rinse per day.

Even before cancer I sometimes ground my teeth at night and already had mouthguards for that purpose. During some of the more stressful periods of treatment I noticed myself waking up with tightly clenched teeth. I've been wearing my mouthguard as much as I can to address that and prevent whatever damage I can.

So I'm mostly banking on hope and optimism and the fact that my dental health has always been excellent. I'll probably take some hits but hopefully not too bad. I don't think I'll have any regrets. I did the best I could given all of the other issues I had to deal with.

Monday, August 19, 2013

Tracker Keeper Evolution

In a comment on "Que Fatique?", Friend Ark asked how I keep track of when to take all the medications and food, etc. He wondered if I use alarms on my phone.

I started out using alarms for various drugs but found it too complex to manage them all. Now I only use timers for short term things like "eat 30 minutes from now."

For everything else I use the paper spreadsheet I originally showed you in a post titled "Tracker Keeper"

I have modified the spreadsheet multiple times through the course of treatment to make it more mnemonic or to add and remove things that are no longer relevant. I also use it to note events I want to remember to report to my doctors such as vomiting episodes.

It works pretty well. The one thing I should probably use a timer for is Tussin, the expectorant that thins the mucous. I'm supposed to take it every four hours and I come pretty close, but sometimes it'll slip to 6 or 7 hours. It really does make a difference in the thickness of the mucous.

Sunday, August 18, 2013

Que Fatigue?

Did I mention that somewhere about now I'm supposed to go through a long period of serious fatigue?

I'm not sure what they're talking about.

I have been a little sleepy. Friday I slept through my IV infusion at the Farber then went home and fell asleep for a few more hours on the sofa. Yesterday I think I slept about 10 hours during the day. In addition to sleeping all night (albeit with mucous-clearing every 1-2 hours. Today I also dozed all though my 2-hour infusion at the Farber plus a few more hours at home.

I can lie down at just about any time and fall asleep.

As I hinted in my last post, I have this impression that my readers will think that now that treatment is over my life is breeze and I'll just nap a little less every day and in a week or two I'll be back to work!

I wish.

Remember that the Mucous Wars have not changed. A month of dealing with it has taught me some coping skills, but the mucous gods can still find curves to throw at me. The post that introduced the Mucous Wars was "Reader Discretion Is Advised", written almost exactly a month ago.

The mucous is showing some minor signs of changing and perhaps abating.

Four nights ago I suddenly started sleeping almost all night, in 2-4 hours stints and sometimes as much as 9 hours total. That was a huge and welcome change. The first two nights it happened it was relaxing! I would get up to clear mucous but go right back to sleep each time. Then two nights ago it turned into a stressful all-night serial dream that incorporated the mucous. I cant remember the other details except that it was one of those dreams that keeps returning every time you go to sleep and all you want is for it to stop.

Last night I had a different serial dream that involved the cast of "Pawn Stars".

Perhaps tonight I can just sleep without any serial dreams.

It makes me realize I can't remember dreaming at all for a long time before that. It's not uncommon for patients like me to develop serious sleep apnea during the Mucous Wars. Perhaps I've been suffering from it and didn't know it. Wonderful Wife says I don't thrash that much, although I do stop breathing for brief periods.

So, anyway, we were talking about how I spend my time...

Managing mucous is a huge part of my day. If I want to have maximum comfort, I'll sit with a bottle of rinse solution (contains salt and baking soda) and a spittoon in my lap. For a spittoon I've been using a cocktail shaker that the family has deemed shall never again be used for a real cocktail. If I rinse, gargle and spit at least every 3-5 minutes I can keep up with the mucous and my mouth and throat won't feel coated and the accumulation of thickened mucous deeper in my throat will occur more slowly. But you can imagine how difficult it is to keep up a routine like that for hours on end.

If I get focused on anything else like writing blog posts or reading email or paying bills or whatever, I might only rinse every 15-30 minutes. By then I'll have a coating of mucous everywhere, and when I do rinse it will take some work to get rid of the backlog. If I nap for an hour or two, you can extrapolate.

Sometimes the mucous production seems to slow down for reasons I don't know. I might actually get a break of an hour or so. If I notice it, sometimes I'll seize that moment for a nap.

At the beginning of the Wars, mornings always involved a violent conflagration. Over time, the parties seem to have reached a truce under which the morning clearance can take place on a slightly more relaxed and less violent schedule. But that means at least a couple of hours of repeated trips to the bathroom sink to rinse, gargle, hack and spit with slightly deeper layers coming up over time.

The deepest layers, which feel like they are way down at the bottom of my esophagus (although I think that's not anatomically possible - I think we're really talking just above my larynx), come when they will. Usually unexpectedly and always violently. Apparently the only way to dislodge that mucous is with strong retching, which will also involve whatever happens to be in my stomach at the time. And transporting that mucous up and out of my throat is not straightforward. Because of its stringiness it will only move a small distance at a time. Meanwhile, its presence in higher and more sensate regions of my throat leads to more gagging and would lead to panicked breathing if I hadn't long ago learned to force myself to relax during these episodes and mete out the violence as I can handle it. If I'm lucky.

This is usually the worst 20 minutes of my day and leaves me with a bleeding throat and a splitting headache.

In addition to mucous management, nutrition, hydration and drug management take a longer than normal. I have drugs I have to take at least 30 minutes before I eat, then set a timer to remember to eat on schedule, then more drugs to take on on a full stomach (or at least as full as mine ever gets via tube feeding). I have other drugs that are taken at specific intervals so I have to track those. Just getting in a can of food takes about 30-40 minutes. I'm supposed to get in 6 cans a day but due to the Intestine Wars the most I've achieved in the past week is 5 cans and most days it's more like 3. Then I also have to try to get in a couple of liters of water, Gatorade or Pedialyte.

I also try to get out for a walk or two, and I might join Wonderful Wife for a short errand just to get out.

I read a little bit of online news and check email and facebook a few times a day. But pretty much throughout treatment I haven't been able to focus on reading for very long at any one sitting. One would think it would be a great time to read a bunch of books but it hasn't worked out that way.

You can understand that when the radiation effects on my mouth and throat finally subside and the Mucous Wars come to an end, my life is going to change substantially.

Then the goal will switch to learning to eat through my mouth again.

Friday, August 16, 2013

On Counting One's Chickens

Lest you think I'm not posting because I'm a week out of treatment and sipping Mai Tai's (through my feeding tube) on a beach somewhere to celebrate. Let me disabuse you.

In fact we are in round two of the intestinal full stop. As we've found through this journey, I seem to be exquisitely sensitive to many drugs. We each have a different genetic profile of components of our metabolism that govern how we process drugs: development of a new drug has to understand the average case in the target population as well as the outliers (patients who will not respond at all, and patients who will get an overdose because they process too efficiently.

Anyway, I'd say that I process opoids too efficiently. A very low dose is controlling my pain, but that same very low dose is giving me the full bore constipation side effect. Ugh.

So once again, even in the midst of stronger and more frequent laxatives I find myself so backed up that I can no longer put anything in my stomach.

At 3:00 AM this morning, in desperation to get some kind of liquids in, I set up a slow drip of plain water at about one drip per second. I had 500 ml in the bag but stopped after 300ml because I was already feeling funky. I don't feel nauseous, just funky. It's like there a switch at the bottom of my esophagus and if my stomach enlarges enough to comtact that switch, Blammo!

A few minutes after I stopped the water intake, the switch was triggered.

I had thought the experiment had low cost since I'd just be vomiting water. Not true. I vomited water plus mixed stomach contents from earlier in the day as well as recently taken medicines, and stomach acid. Vomiting burned my already painful throat and set it on fire. It still hasn't recovered.

I shan't repeat that experiment.

Today I want back on IV fluids. Nurse Stephanie somehow magically found a vein with an IV we can leave in for four days (less poking). I slept through most of the infusion of 2 liters of saline today, and I slept another hour or two when we got home. The fluids are giving the laxatives I'm loaded up with something to work with and I've had some minor successes there.

Lets hope continued laxatives and fluids over the next couple of days get me cleared out.

And lets keep our fingers crossed that the mucous production really does start to diminish significantly in the next week. That's the key.

Thursday, August 15, 2013

Show Me the Money

In case you never view the blog in a full-sized browser you might forget about the goodies on the right hand side.

The Puncture Count has fallen hopelessly behind but probably should be at double its current total. I used to not mind needles one bit, but I am done getting punctured for a good while if I can help it.

What is up to date, however, is the running tally of the medical bills.

The current totals:

  • Billed: $228,000
  • Insurance paid: $83,000
  • We pay: $2,400

Saturday, August 10, 2013

Ring Theory

Friend Alex sent along this piece from the L.A. Times titled "How Not to Say the Wrong Thing".

The Ring Theory makes a lot of sense.

Weekend Update

It's been so long since I've written much. I have a bunch of random topics.

The first one is disgusting. If you're easily grossed out, skip the next paragraph.

Remember that sinus infection? I can't remember if I reported that it finally resolved itself back in the last days of July. But it took a while to drain and expectorate the dregs of it. A week ago Friday a day or two after most of it seemed to be cleared out, I coughed up an especially putrid looking (and smelling) brown-and-dried-blood entity. It was like the rotten corpse of the alien queen finally being expelled from the darkest reaches of my sinuses. That was the last I saw of the sinus infection. (Stay tuned, it may be returning. But I have antibiotics on hand in that case and at least it won't be happening on top of a bunch of other misery)

Cisplatin, the chemotherapy I was given in three high doses, has neurological side effects. The main ones I'm experiencing are loss of hearing and tinnitus (ringing in the ears). It feels like someone has turned down the volume on the world. And the volume level changes from time to time: quite suddenly things will get a little louder or quieter. It's also frequency specific. For example, I am completely deaf to the frequency range of the beeps emitted by most electronic devices. I can't hear my watch alarm at all, nor can I hear the beeping of our electronic thermometer.

Usually these side effects are temporary, or at least only partially permanent. Lets hope this mostly resolves because the magnitude of the loss is pretty significant (and has been since a couple of days after the first chemo dose).

We're in the last cycle of family support now. We've had wonderfully supportive visits from Big Sister, Little Sister, Los Parentes and now Wonderful Wife's parents are here - having driven from Washington State! Like Wonderful Wife and I they love a good road trip. At the beginning of treatment Big Sister insisted we arrange help as it would be very difficult to do it alone. Of course she was right. Especially with those relentless daily trips to radiation it was always nice to not have to worry about The Progeny being taken care of. I think The Progeny might have had an even more fun summer vacation than usual due to all the extra time with relatives.

The Mucous Wars continue and are the most annoying remaining side effect. (Hearing loss and inability to eat are also annoying, but less immediate). I use a mouth rinse recommended by Dana Farber that is water with salt and baking soda. Buffered saline in science speak. I rinse with it, literally, once every minute or two if I'm keeping up. If I do that, I can keep the mucous from migrating to my throat and requiring painful hacking to get out. But imagine having to grab a water bottle and a spit receptacle every couple of minutes all day long. It gets old.

I'm realizing I get a little over-anxious about it. To the point that I never lie down during the day for fear that I'll form a mucous collection that I'll have to get rid of. And the other night I was so anxious about the morning clearance process that I stayed awake until 4:00 AM avoiding sleep. That won't work.

Last night I was able to go to bed at a normal time and just go with the flow. It meant I woke up every hour when my throat and mouth were full of mucous, but I just got up and did a Level One Clearance (mouth and upper throat only - no hacking) and went back to bed. I was able to go back to sleep every time. And now the morning Full Clearance has not been as bad as I expected.

The Mucous Wars are expected to come to an end approximately two weeks after the end of treatment, plus or minus a week. Perhaps, just perhaps, it is already improving a bit. That is the next milestone for me - the ability to sleep through the night without clearing mucous.

Why do the side effects continue, and even perhaps get a little worse, after treatment is over? Remember how treatment works: it damages the cells' DNA. In many cells it will not damage it enough to kill the cell outright, but the cell will die when it tries to divide and it cannot replicate its damaged DNA. So I still have many cells that were damaged by my last radiation treatments last week but which have not yet tried to divide. Within two weeks of the end of treatment most of them will have tried, and died. Then real recovery begins.

I have a very strange relationship with my throat. I realized a few days ago that I have a mental model of multiple throats. When I'm painfully clearing part of my throat I imagine that I'll get to one of the other throats next. I don't imagine this on purpose, I just realized that that's how my brain is treating it. Too much pain for one throat, I guess.

The funny thing with me is that I can handle a fair bit of pain. It's other kinds of discomfort that drive me nuts: cramps, nausea, fever, itching, etc. Oh, and full intestines. And non-stop mucous production.

And then there's swallowing. I essentially stopped swallowing - completely - a few weeks ago. Mostly because it's painful but also because it meant swallowing mucous and during the sinus infection swallowing mucous made me vomit. Over the past week or so my involuntary swallow reflex has begun to come back. It surprises me so I'm taken aback by the sudden pain. But I'm starting to get a little used to it. I've even swallowed on purpose a few times just to check the pain level. It's bearable. I think soon I will start trying to swallow a few sips of water per day as the beginnings of regaining my swallow.

We met with a speech and swallow therapist twice and they make it sound very scary - if you don't do all these exercises we give you the 28 muscles and 53 coordinated movements involved in swallowing will be completely forgotten and you'll never swallow again! Not really but you get the idea. We had so much else to deal with that I didn't do any of the exercises but I'm ready to begin them now. Some are just stretching out my mouth since I haven't opened wide to put in food in a long time.

I had a few other topics but my energy has run out so they can wait for a future post.

In Sickness and in Health

I've told you before that I gave Wonderful Wife her pseudonym for a reason: so that every time I mentioned her both you and I would be reminded just how wonderful she is.

This is another acknowledgement. I could never make too many.

She was there with me through all those sleepless nights of misery, staying awake next to me to stroke me and comfort me.

She was always searching for relief for me.

She held me through lots of crying.

She was unfailingly sympathetic and encouraging.

She was never more than an arm's length away.

I note that now because with treatment over and me not so miserable, Wonderful Wife is sleeping through more of my 2:00 AM coughing fits. She is getting out once in a while and doing something with The Progeny. She went to the neighbors' house this afternoon for a couple of hours and enjoyed a beer.

I notice that I'm going through a bit of withdrawal from that intense attention she has been giving me for two months. I miss it, but of course it is no longer necessary.

I am so grateful for that attention. I can't imagine having gone through that experience without her love.

I hope our situation is never reversed such that she faces an illness this serious. But if it does occur, may I be as wonderful to her as she has been to me.

Thursday, August 8, 2013

Writer's Block


Yup, I'm still here. Still alive.

The Chemo Tunnel last week was about the same, but of course as I was emerging from it this thing had one more obstacle to throw at me.

Serious and unrelenting constipation. As in 10 days' worth. To the point that by Saturday my stomach was so compressed it was a challenge even to put a few milliliters of liquid medicine in it.

The doctors kept escalating the laxatives until I was up to magnesium citrate, which is one step short of colonoscopy prep.

Nada. No result.

Well, some burbling noises. But that was it.

Since I could barely get in medicines, I clearly couldn't get in food. So I hadn't fed since Saturday.

I was getting desperate. And very unhappy.

Finally the team decided to go the full colonoscopy prep route and my gut had made enough room that I was able to get it in over an hour or so.

If you're not old enough to have had the pleasure of a colonoscopy yet, the prep involves drinking a gallon of solution containing a high concentration of salt. The salt draws tons of moisture to your colon from the rest of your body. The result is a completely washed out colon. Gives the gastroenterologist the clearest view.

There's no cramping, which was always my biggest fear. Only the weird sensation of peeing out your butt.

[Public Service Announcement: If you are over 50 and haven't had a colonoscopy yet - DO IT! NOW! It is not nearly as bad as people make it out to be, and it is the only test you can have where afterward the doctor can say "I guarantee you do not have colon cancer and will not have it for at least 5-10 years."]

Anyway, that worked.


Now I'm trying to regain strength. I've lost 18 pounds since treatment began, but half of that was in the past few days while not feeding.

When I regain more strength I'll get back to writing. Hopefully tomorrow.

Oh, by the way: today was my last day of treatment.

Thursday, August 1, 2013

Virtual Hiccups

One of the side effects of the post-chemo anti-nausea drugs is that I'm very prone to hiccups. Any sudden movement will trigger them.

However, I discovered yesterday that if, immediately after the first hiccup, I stand or sit very still and calm my breathing I can suppress them.

The weird part is I will feel from one to three "virtual" hiccups. It's like a wave of sensation that travels from my diaphragm to my head with the same frequency as real hiccups would. I thought it was completely mental, but I noticed that if my environment is quiet when I do this I actually hear a little rush in my ears when the wave reaches my head.

I've probably experienced 30-40 triggers today and I have been able to avoid the hiccups every time. It's a big relief not to have to endure them once they get established.


Progeny the Elder drew this on the iPad today.

It's a good sign. Progeny the Younger is more tuned into my day to day wellbeing and likes to stroke me to help, but she's doesn't fully understand the seriousness. The Elder, however, has been more scared that her dad was going to die and approaches me cautiously. Not terrified, but worried.

Today we told her that the doctor is very optimistic that I'll be cured. She drew this picture right after we told her the doctor's comments.