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.

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.

Are You Still There?

And... We're back!

That was a lovely interlude in the Kingdom of No Internet.

Really! It was very cool to be in a place where literally no one was seen staring at a little screen in their hand!

Before we get rolling again let me say this: you guys are boooooooring! Not one single one of you has commented on any of the 30 posts so far. C'mon, Dear Reader! You must have questions! Snarky comments! Errors to point out! This is not meant to be purely one-way communication, here. I guess in the end it's fine with me if I'm just typing into the abyss but it's not my preference!

Another note: I'm typing this into the abyss at 2:30 AM. I get awakened in the night by something: being too warm; the cat walking over me; coughing - whatever. And if my brain reaches a certain level of consciousness then it's all over: I'm going to be awake for a while. Lately it's you keeping me awake. I start composing one or more blog posts and get so involved in it that I realize I'm not going to sleep until I get out of bed and write the goddam thing!

To tell you the truth I don't mind. I enjoy feeling that much drive to write.

OK. with the preliminaries out of the way...

A little weird Cancer Fun Time! psychological context for you: ever since I was initially diagnosed I've had this strange inclination to keep cancer separate from my "normal" life. When I first started telling friends about my cancer via email I insisted on keeping the cancer conversation separate from our normal email conversations. I also have kept a family blog for years (which has been sorely neglected this past month!) and I'm not sure how much I'll mention cancer there. Ditto for Facebook. I definitely don't envision that I'll announce having cancer on Facebook, and I may never mention it at all to my friends there.

That's why I've been mysterious about where I went on this recent hiatus: that's "real" life and according to the "rule" of the previous paragraph it doesn't belong here.

We'll see how that rule plays out. I.e. whether it survives. I find the rule fascinating because cancer is normal life. Probability says all of us will be touched by cancer multiple times during our lives, either when a loved one is diagnosed or we ourselves are.

So I'll make a little tear in the veil and tell you where I was: a Disney Cruise in the Bahamas.

Wonderful Wife and I have been saving for a couple of years toward a European trip with The Progeny so we had some vacation funds available. Our summers are normally packed with weekend adventures and camping as well as a two-week trip to our ancestral homeland and that will all be severely disrupted this particular summer. We saw a window between diagnosis and the start of treatment and seized it for a 4-night cruise.

We managed to keep it a surprise until Sunday morning at 5:45 AM when we woke up The Progeny and told them there was a surprise for them on the kitchen table: fake "cruise tickets" we had made that required immediate departure.

Doctor Rad (who I now wish I had named "Doctor Zap") and Doctor Chemo (who I now wish I had named "Doctor Tox") were onboard with the plan. In fact, Doctor Rad rearranged her normal schedule to accomodate us and still accomplish the radiation treatment planning in time to start treatment when planned. (Thank you Doctor Rad!).

Doctor Rad's main concern about me going on a cruise was choking, since Pappy the Papilloma is getting more obese all the time and being obstructionist in my throat. I assured her that I'm used to it and learned a month or so ago that I need to chew my food very carefully before swallowing. If you remember way back in The Beginning, it was partly an increase in minor choking events that sent me to the doctor in the first place.

Friend Britt's main concern was norovirus. A serious illness like that could delay cancer treatment. Friend Britt happens to spend part of her work time in a Travel Clinic advising world travelers how to stay healthy. She advised me to avoid using public toilets, to avoid eating uncooked foods unless I peeled them myself and to wash or sanitize my hands often. I thought of her every time I saw the preventive measures Disney Cruise Lines takes: all toilets designed to make them hard to flush without closing the lid (designed to minimise aerosolization of germs); lots of encouragement to wash hands often and especially before meals; a crew member handing out sanitizing hand wipes to every passenger entering every restaurant at every meal; a crew obviously cleaning the ship 24/7; and all cold or wet food kept in glass cases in individual servings that a server hands you upon request - no passengers pawing or sneezing on cold or raw food.

So ya, the cruise was all great and happy and a lifetime of memories yada yada yada. Let's get back to the cancer we're all here for!

It so happened a cold had been making it's way around the family for a couple of weeks and I finally felt it coming on the day before we left. Fantastic! It actually fit a pattern for me: right after a stressful period, when the stress is finally relieved, that's when I get sick.

For everyone else it had been a very minor cold with just a day or two of minor discomfort. That's how mine started out. But then we flew to Florida and had a long active day and my cold didn't like that. It got worse.

The head cold portion went fairly quickly but then it moved into my chest and resulted in a persistent cough. And that was not A Good Thing since I already have a compromised throat.

Side note: when you are about to board the cruise ship you have to sign a declaration that you and your party are not sick at the moment and have not been sick for the past three days. I had no idea what the consequences of answering "yes" to those question would be but I was not about to find out! I lied! But of course I would take whatever precautions I could to avoid spreading my illness to other passengers. Besides, I knew I wasn't bringing a gastrointestinal illness aboard - just a cold.

The cough started cranking up my throat sensation from discomfort to actual pain. And when the cough turned productive, the phlegm I coughed up started containing moderate amounts of blood. Sometimes not so moderate.

Pappy the Papilloma was aggravated.

Fortunately he seems to heal fairly quickly. Remember how chemotherapy works by interfering most with the cells in the body that are dividing most rapidly, and that the GI side effects of chemo are due to that fact that the cells lining the GI tract are among those cells? It also means those linings recover quickly from insult.

So the last two days of the cruise I spent some of my time expectorating sanguine mucous. Mostly cleared now. But I'd better inform the doctors today.

Some closing notes on the cruise itself:

It was a blast! I highly recommend it. It's more expensive per day than any other vacation I've taken but it's also completely immersive and kids are on Cloud Nine the whole time. I'm fully aware of the profit-making corporate nature of the Disney empire but for family vacations they really do it right.

I noticed, and I overheard many other passengers remark to crew members, that the crew members seemed to never sleep. I would see the same servers, for example, working early breakfast and late dinner. On the last day we commented to one of our servers that we didn't want the experience to end. He said the boat sails again in just a few hours after we get off so we could go again. I asked if he sailed again then and he said yes. We learned that the crew works 14 hours days 7 days a week (the Dream, our ship, sails our 4-night cruise plus a 3-night cruise every week, repeatedly. Forever.) with no time off. They sign up for a six-month contract. Then they have two months off (our server remarked that it takes one of those months to recover). Then they do it again.

I can't imagine.

When we got back to the Land of Internet I looked up reviews by Disney cruise employees. You know what I found? Every review I read rated the job 4 or 5 stars. They all loved working with such a diverse crew (the Disney materials say the crew has members from 60 countries - each crew member has his or her country of origin on his or her name tag - great little geography lessons for The Progeny). They all remarked on how well the company is managed and how heard they felt as employees, how well they were trained and how empowered they felt to make customers happy and even how privileged they felt to be able to give families such great memories. They all said the work was grueling but that they wouldn't trade the experience for anything. Maybe Disney is somehow gaming the review sites, but I was impressed.

That's pretty far afield from cancer but I thought it was interesting.

Anyway, I'm back. And treatment starts in four days.

Survival

I've been commuting to work by bike, weather permitting, for about eight years. My current commute is 11 miles each way from a suburban town into downtown Boston.

Today I rode to work for the first time in a week. I managed not to die by the side of the road lying in a pool of irony.

Doing a Geographical

We already had plans to visit my good friend Bill in Hoboken, NJ over the weekend. Wonderful Wife and I decided to stick with the plan. There was nothing we could do about my diagnosis and the trip would be a good distraction - keep us from hanging around the house stewing in our worry all weekend. Plus The Progeny were excited to see Bill's kids and visit a playground they love in Central Park.

We left the playground just in time as a big thunderstorm arrived. We got to watch a fantastic lightning show over the Hudson River through our windshield while driving to Hoboken. Bill's son showed Progeny the Elder some new Minecraft tricks and we had a nice dinner and kicked around Hoboken in the evening. On the drive back to Boston we stopped at the Pez Factory and Dinosaur State Park. All good distractions. Mission accomplished.

I had thought I might give Bill the news during our visit but an opportunity never arose.