Quick update, much cheerier

So, I am doing much better.  I am feeling like a human being again.  Leslie and I went to a movie yesterday (the new Woody Allen).  My friend Brian is about to swing by and we are going to the ocean with Ziggy.  Yes, the mucus is still doing the same thing, but I am now fully adapted to it as part of my current life. So, I no longer want to be alone.  I am happy if you want to give me a call or come by (though give me a little warning.)  If you happen to see me spew, it won't bother me anymore.

I am still very tired and I decided I just can't do the Ring operas at night.  But, come hell or high water, I am going to Gotterdammerung on Sunday.  It's a matinee and I know I can handle that.  Plus, as Anna Russell would tell you, it isn't like one misses any plot developments by missing the first three operas.  I know most people won't know what the hell I am talking about, but some of my blog readers most certainly will...

Anyway, I would say that I have returned to my former good humor.

Cheers!

The mucus one...

Ok, I have been talking about mucus for a long time now. Promising the full story. So I guess this is the time. If you don't like mucus-talk, stop reading now.

When I read all the tonsil cancer blogs, everybody seemed to agree that the worst thing about the experience was the mucus. So, for instance:

Clearing my throat can be tough, and the mucus frequently makes me gag. Especially when I’ve been sleeping or napping. I’ll wake up with a great deal of mucus and have to make dash to the bathroom so I can breath normally. UGH. The swish and swallow helps, but the mucus remains a real bummer at this point.

I had a problem with the mucus causing gag reflex issues and vomiting even with using the pump and the rinses.

I have to sleep in a chair or I wake up with mucus flooding my throat and I end up vomiting it up.

So, I knew it was coming!

Essentially, it is a byproduct of mucositis, which is an inflammation of the mucous membrane that lines the digestive track. In the case of radiation of the throat, the mucositis is generally throughout the mouth and throat. It gets worse over time and peaks after the treatments are over (cause the throat is still "cooking"). It really wasn't bad at all until the hospital, but now it is as advertised. If I had never gotten sick, I am sure it wouldn't have gotten as bad as it has, but that's life.

The mucus just pours out of the mouth most of the day. Usually it just oozes out in a foamy form and it is easy to clear through spitting into a cup or tissue. I go through about 1 ½ rolls of toilet paper a day. It's annoying but really not that big a deal.

I fill up a couple of bags a day of mucus-filled toilet paper

But then there are the bad times: a really a thick mucus in the throat. As I try to cough this stuff up, sometimes it won't come up (hence dry heaves) or sometimes it comes up in rather massive quantities that are sort of amazing, sometimes with accidental vomit. People on the blogs call it “ropey mucus” because it certainly does stick together well. It is very unpleasant and these attacks have been happening two to four times a day. As the mucositis clears, it will clear. But, the mucositis doesn't tend to begin to clear for a couple of weeks after the last treatment. Again, I should start improving around July 1^st.

Beyond the toilet paper and the cup to spit in, I also have a suction machine to help clear the mucus. Whatever I use, it remains very unpleasant.

Sucking it up with my toilet paper roll always nearby...

One of the biggest problems is that food makes it worse. So, it is a powerful disincentive to eat. And, of course, I am completely uninterested in food in any case except intellectually. I don't have an appetite. But, I know that I really need to eat to rebuild my strength. This dilemma weighs on me every day. Mucus attack? or Nutrients?

Eating is really, really tedious. It takes at least an hour to eat a meal. It isn't that it hurts. It is just that I have to psych myself up for each bite. Plus, if I eat too fast, the "accidental vomit" will more likely happen.

I try to have all food eaten by around 5 pm so the mucus can calm down before I go to sleep. I generally knock myself out with a "PM pain reliever" and an Ativan. So far, I sleep through the night and haven't woken up with mucus problems at night like many people. In this way, I am quite lucky.

The reason I haven't really wanted visitors is because of the mucus attacks. I really don't want to be around anyone when I have them. (Leslie is so used to them that she is an exception, though I don't like her to see me going through it, of course.)

Sorry if this is an anti-climax. Earlier on, I had thought about taking some really gross pictures but decided that was too disgusting. I think this gives you enough information.

Anyway, the good news is I am up and about. I even mowed the lawn yesterday. So, I am getting there! Really I am. I will let you know when this part fades away. I am doing everything I can to speed recovery along but it just takes time.

I'm baaack....

Wow, that was miserable,  The last 18 days of my life really were a personal low.  A new baseline for the rest of my life.  I was pretty zombie-like for most of it, though I managed to stay up with my emails that needed response. Who knows if what I wrote made any sense whatsoever.  But, at least it was off my to-do list.  It is very, very hard for me to leave my self-imposed responsibilities no matter how bad I feel. I am pretty sure on my death bed, I will be writing some important "wrap-up" email.

I did, however, manage to spend most of the last several days working through Sex and the City. (Thank you, Sandy!)  The first four seasons of that show were pretty much fluff—fun fluff, albeit. But, I really like when they begin to take on more serious issues in the final seasons.  Anyway, I am now in Season Six, part 1 and I love all the plot lines now.  (We just got rid of the irritating guy who broke up on a post-it note.)  I tell you this so you know that there was some happiness in my last several days.  But, if you saw me, I looked pretty much like I was near-comatose. Leslie said I didn't smile for days.

Anyway, the cold is no longer an issue and I can actually get up and walk around. I will try to write a real blog tomorrow to tell you what it is I have actually been experiencing of late.  I will, at long last, talk about the completely and utterly disgusting mucus.  Avoid the next post if that sounds horrible to you.  (It is.)

But the big take-away from today:  I feel human again.  Ok, back to the TV.

One set forward, two steps back

I got settled into home with my little suction machine for all the mucus that pours from my mouth (I know, I owe a full explanation but until I feel better, it's not coming.)  Yesterday, I was feeling a little better, walking around, doing some maintenance items (of course!) and felt like I was heading in the right direction.  My throat was a little less sore than it had been in the hospital.  Things were looking up.

Today, I woke up to a cold and I am not doing very well at all.  For a few days, I will probably not bother answering email and the like.  I am just tending my symptoms—which is basically a full-time job—and trying to eat in between.

I will return!  I will make jokes!  Just need a few days of concentration on dealing with all these problems.

Love you all.

Leslie moved back in to Miramar! I did, too!

Ok, this is going to be really brief, but we are both back in our home.  But, Leslie has a bad cold and I am very weak.  Two more radiations to go. But, remember, the symptoms continue to get worse for about two weeks after the last radiation, so I begin the upward course to recovery around July 1.  Until then, we don't want drop-in visitors.  Please don't come unless you have made a specific plan with one of us.  If you are really wanting to come, send an email to me or Leslie.  Do not call as it is really hard on my throat.  Sorry to not be my cheery self, but I am at moving to the nadir of the treatment and, as Greta Garbo said...

I promise I will write more—and it will be perkier—after I have regained a little strength from the battle with the infection. By the way,  it wasn't really pneumonia though I did have an "umimpressive" amount of fluid in them according to Dr. Singh.  That amount of fluid couldn't have accounted for my symptoms.  All the docs say it will be forever a mystery but I did, finally, respond to the antibiotics (or my body cleared the problem while I was on the antibiotic.)

It's great to be home, however bedraggled we both are.

It’s Pneumonia, By Gum

Another Guest Post By Leslie

As I mentioned in my last entry, Robin has been suffering from fevers and chills for over a week. It was very frustrated, because her blood cultures, chest X-rays, and other lab reports all were coming back negative, which had all of her doctors perplexed as to the cause of the infection. So she just kept feeling like crap.

Finally, Sunday morning it was decided to admit her to the hospital. Once there, she was given a second chest X-ray, and what-do-ya-know, but it came back positive this time. Turns out she has pneumonia.

Now you may think this is a bad thing, but we actually think it’s good news: They finally know what the heck has been causing the fever, and can now treat it with the proper antibiotics. Plus, she’s getting 24/7 care by a whole slew of competent (and very friendly) medical professionals. (And, Robin would want me to add—because she’s said it to me several times—I get a break from having to tend to her all the time).

I’ve been continuing to provide most of her food, as Dominican Hospital doesn’t have a wide selection of things she’s able to eat. Moreover, we’ve now finally got it pretty wired what hurts her mouth and what doesn’t. Yesterday, for example, I brought over a strawberry shake made with soy milk, protein powder, ice cream and Nestle’s strawberry Quick; a bottle of watermelon juice; a bottle of papaya juice (both freshly-made); and some egg-drop cream of corn soup. Here’s a photo of her yesterday, strawberry shake in hand:

This morning when I spoke with her, Robin was short of breath, and they now have her on oxygen. She says she’s very frustrated, because there doesn’t seem to be enough time in the day to do all her necessary tasks: throat (and mucous) management; teeth care (which is important because of the radiation she’s receiving); eating enough (which is difficult for her); not to mention all the normal hospital operations (folks taking her “vitals” and changing her IVs (antibiotics and hydration); taking blood samples; various nurses, doctors and other medical personnel constantly coming by; etc.).

I’ll be going to see her this afternoon to bring more food that she has requested (egg-drop chicken soup and another strawberry protein shake), and some other things she’s asked for. She has her laptop (yes, there’s wifi at the hospital), and lots of DVDs to watch.

So it’s been a crazy time for us this last week, what with Robin’s fever and then hospitalization; dealing with a hyper-active puppy (thank you to Daisy and Julie!, Ziggy’s new best dog-friend and her human mom); and getting ready to move back into our Miramar house (this Wednesday—yay!). But we’ll get through it, and all will start to become normalized soon, very soon.

Robin says that she prefers not to have phone calls or visitors, but emails are great (just don’t expect an answer).

Thank you to everyone for their kind messages and offers of help!

Really, it's not that bad!

I read the comments after the last post and I thought, damn, it wasn't all that bad!  I was chilled and, Laura is completely right, I hate that.  But I get chilled a lot, which is why I want to live in Hawaii more.  But, the water/feet trick did work! I am a little worried that this is something that the pills won't kick out...but no matter what, I will be fine, I will be laughing. Just with a few tears and a large dollop of whining throw in from time to time. 

So, today, I did the hydration thing at the oncologist office.  They sent me home with the IV fixings still in my arm so I can do it again tomorrow. The fever just dried me up. I told you I would stay hydrated one way or another.

And here are some really good things:

I can't do cocktail hour with Leslie, but Boston Legal in bed has taken its place.  We let Denny Crain and Alan Shore drink the cocktails  and we just watch (and, sometimes, Leslie joins them)

We get to return to our home in 7 days!!!!

Only 8 more radiations to go.

Ziggy gets to have doggie playdates in two days.

And—drumroll, please—no more chemos!  My ears have been buzzing more than after the first dose of cisplatin, so we decided to drop the third one to limit hearing damage. This is very common and both Dr. Yen and Dr. McMullen said that they don't think it will change anything in my outcome.  In other words, they do overkill.  So, it will just be kill instead.

Seriously, I am doing fine.  Don't be sad!  Leslie, on the other hand, may need your sympathy.  She has to put up with me.

The Downward Slide....

Guest Post By Leslie

Robin asked me to write her blog post today, as her body has finally succumbed to the strain of all the radiation and chemotherapy she’s been receiving over the past five and a half weeks.

Over the weekend she started getting chills—bone-deep, she reported, that wasn’t helped by having the heat on or wearing warm clothing (though we have been keeping the house nice and toasty, and she has been wearing slippers and a sweatshirt).

Normally in such a case Robin would take a bath to warm up, but unfortunately, having the warm water on her stomach has been making her feel nauseated. So yesterday she tried the warm-the-feet-to-warm-the-whole-body trick, sitting with her feet in hot water in front of the gas fire in the living room:

This did help, but didn’t solve the problem, and she had to get up in the middle of the night to soak her feet again. (Note that I, on the other hand, was throwing the covers off me last night. So it’s her body, not the weather.)

In addition, she’s been fighting a battle with thickened saliva/mucous, which is also making her unhappy. (Robin’s planning to dedicate an entire subsequent post to this lovely subject.)

Finally, the fatigue has now really set in. She’s been spending most of her days in bed, working on her laptop, reading magazines, sleeping and watching DVDs (Thanks Sandy, for the ones you loaned us! We’ve been watching Boston Legal in bed every night.).

So today after Robin’s radiation treatment, we drove over to talk to her oncologist (or should I say, her secondary one—the adorable Dr. Yen—whom we’ve seen on several occasions when Dr. McMullen has been gone). Robin knew she was supposed to call “immediately” if she started suffering from chills, but she really didn't want to bother them over the weekend.  (They are closed Monday.)  Plus, it had gotten significantly worse Monday evening.

She was also suppose to call if her temperature was above 100.5, but we didn’t have a thermometer because ours is trapped—like most of our belongings—at Miramar.  And we are cheap.  We are loathe
to duplicate items we will get back very soon. Silly us.  (We bought one today.)  She had a 102.5° temperature, and lower-than-normal blood pressure. (But her red and white blood cell counts were both good.)

Dr. Yen said that often in this situation he would send the patient directly to the hospital, but in her case (he said, sizing her up), she looked pretty good. So he was sending her home with a prescription for antibiotics to battle the infection that was no doubt causing the fever and chills. He also ordered a blood panel to be taken, part of which will be cultured to try to see what sort of bacteria is the culprit.

Robin’s in bed sleeping. I’ve been trying to make sure she keeps eating enough, because all the chills, mucous and fatigue have been killing her appetite. She has an appointment again tomorrow with her (regular) oncologist.  And, she sees her radiologist Thursday. So don’t worry; she’s in good hands.

Hanging in there...12 more radiation treatments to go

It's odd.  My mouth is doing much better.  I haven't taken any pain pills in a week (including ibuprofen).  All my specific mouth sores have gone away. I can now eat soft, solid food—I had some Trader Joe's mac and cheese (thanks for the suggestion, Trish), and Leslie made me some really greasy Chinese-style noodles (thanks, sweetie!)  But, I can't taste sweet at all.  I opened a coke to see what it tasted like, and it reminded me of the colonoscopy prep beverage.  I won't be trying coke for some time to come... However, I can still taste lots of food—cheese, for instance, tastes like cheese.

I saw my doctor today and she was surprised I was doing so well.   She doesn't expect it to last.  Her chipper words to me:  "No pain, no gain!" Anyway, that part is going much better than expected.

What is going less well is the fatigue.  I am now officially tired most of the time.  It's not the worst thing in the world...I am watching lots of TV shows and enjoying them.  But, I can't do anything to help Leslie and I feel bad about that. Particularly since Ziggy just got spayed, and Leslie has the unenviable task of keeping her quiet for 10 days.   I think this is the part where I am just supposed to let go and not feel responsible.  For me, that is much easier said than done.