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.
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.
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!
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).
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.
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.
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.
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.
