PET scan clear

Of course, my doctor said I had to wait to see her in person to get the results from the PET scan.  And, if the results where negative, I am sure that would have been the case.  But she called and said all is clear.  I had totally expected that result, by the way.  I could tell that the radiation was very, very effective.

The good news is that I am eating very well here in DC. Last night I had a salad and lasagna (thanks, Jane!), followed a Reese's peanut butter cup (thanks, Leslie!) and a See's candy piece (thanks, Mom!).  I haven't eaten much candy in years but weighing 125 pounds gives me a lot of freedom.

As for as I am concerned, this completes this blog.  If I post anything in the future, it will be on my regular (very, very irregular) blog here.

Thanks for all your support!

Finally, progress!

Well, the good news is I am actually improving, and rather rapidly as a matter of fact.  Less than a week ago I was stuck morning and night with the same food lest my mouth explode in a burst of pain.  But, almost overnight, I have been able to add all sorts of food successfully.  It began when Leslie made some delicious Pappardelle Alfredo, which went down very nicely.  So, I started to try other things—chow mein, string beans, bananas, onions, refried beans, Zachary's potatoes, nuts, watermelon (not juiced) and yogurt with blueberries.  In general, I don't eat junk food but I have a fondness for Jack-in-the-Box's taco and onion rings and McDonald's Big Mac and fries, so, yes, I bought and ate those.  Now, not everything went down easily, but nothing led to vicodin.  It's been about five days since my last eruption of intense mouth pain, so I clearly have turned a corner.  

Leslie and I actually ate the same meal at the same time yesterday.  That was the first time since early May.

And this improvement came just in the nick of time!  I leave for a month this coming Tuesday for DC (and a side trip to NYC). I am staying by myself in a friend's condo. I am so relieved that I won't have to cook every meal!  I hate to cook.

The grind...

Damn, this mouth just isn't getting better.  Both my ENT and my radiologist have officially labeled me a "slow healer".  Dr. Kim says she isn't worried. (How nice for her.) She claims that some people just don't heal as fast.  I have noticed.  I continue to eat a lot of dairy: eggs, milk, cheese, yogurt.  I can only thank the universe that I don't feel compelled to be a vegan. I seem to be allergic to most fruits and vegetables.

On occasion, it all gets to me and I sit in my big black chair and cry.  Mostly, I am just fine.

Anyway, Dr, Kim suggested that I push back my PET scan a few weeks to allow for the mouth to heal a bit more.  For those who don't remember, that is the one that will show if the cancer has cleared from by body. So, the scan is now Sept 12th.  The only problem is that I will be going to the East coast from Sept 13th - October 11th.  So, I won't have the results until I return. I will let you all know the results then.  It's a cliffhanger!

Why not me? (And other random thoughts on The Cancer)

Seriously, if someone has to have cancer at a relatively young age, it should be me.

The day I knew that I probably had cancer—and late-stage cancer was likely as tonsil cancer symptoms tend to present after it is pretty serious—I made my peace with it.  Of course, it came as a shock, but I made a quick inventory of my life and decided that, whether this ended up killing me or not, I had led a charmed life and I could call it complete if that was the reality. Obviously, I was committed to do what I could to send it into remission.  I just figured that it was better me than most people.

If we didn’t have health insurance…

If we didn’t have plenty of material resources…

If I didn’t have Leslie…

If I was still working…

If I had children…

If my life had been one of struggle and heartbreak…

Then, I well might have said “why me?” 

But, with all that I have been given in life and all my good fortune, why not me?  Plus, I have a 90% survival rate.  That makes it all ever-so-much easier.

On “Fighting” Cancer

Above, I put fighting in quotes because I don’t feel I am fighting. I feel I am experiencing, just like always. When I keep living after the treatment is over—as I am pretty damn sure I am going to do—I am not going to feel like a “survivor”.  I am just going to feel the same as always, alive.

People keep telling me they like my attitude.  I will tell you what is the foundation of my attitude: I am going to die (and so are you). Of something. If this ends up killing me, it’s the thing that killed me.  Something will.  I am not fearful of death. I am not one of those folks who want to live forever.  I want to live as long as I can in a healthy, happy way.  If I can no longer do that, than I will be ready to pass away. And leave the world to those just born. To quote Laura Nyro (who, incidentally, died at 49 of ovarian cancer): 

And when I die, and when I’m gone,

There’ll be one child born

in this world to carry on.

That is beautiful, wondrous cycle of life.  I completely embrace it.

Dying, like cancer, will be another experience. It will be the last experience, of course.  But, I plan to exit laughing. Or listening to Wagner’s quintet from Die Meistersinger.  One or the other.

Getting your priorities straight

Lots of people have suggested that this experience will lead to a reordering of my priorities in life, seeing more clearly what’s important and what’s not.  I am sure that does happen to people whose priorities don’t match up with their deepest desires, but I actually don’t have that issue.  I have known for several years what I want to do with my remaining years.  That is, using my skills to help my friends and family. Leslie wouldn’t mind if I dialed back some of that helpfulness (and I am trying a little bit, honey, I really am!)

People kept telling me that I had to stop focusing on other people and really focus just on myself.  But, that is just silly.  Helping people is what I want to do in my life, what gives me the most satisfaction.  Why on earth would I want to stop the thing that makes me the happiest during one of the worst periods of my life?  I wasn’t—and didn’t—let cancer reorder that priority. While I was a total hermit during much of the treatment and for a period after, I kept all my commitments to people, even from my hospital bed.  And, that made me happy.

Update

My mouth is the same as it has been for quite awhile.  It is going to be a really slow process.  Don't expect an update saying that I am back to semi-normal for months.  It just isn't going to heal quickly.  Oh well.  I have one thing I can eat for breakfast that doesn't hurt (bread pudding with soy milk and a poached egg) and I have one thing I can eat for dinner that doesn't hurt ( a soup with chicken stock with an egg, milk and  cheese).  Hmmm, I eat some other things that hurt a bit (protein shake) and sashimi. I try things.  Most don't work.  Like I said, oh well. I am a happy person in spite of this.  I have Leslie (26 years yesterday) and I have Ziggy (just an almost perfect dog).  My friends and family. A great house.  And way more. I am one lucky person.

Seven weeks past treatment

I am actually worse than I was at the last post.  I don't know what is going on, but my mouth is actually on a downward trajectory.  I have had to deal with the general mouth soreness, an occasionally acute pain that is on the right side of my mouth, lots of canker sores and, recently, a herpes outbreak within my mouth.  So, I am actually eating less than I could before. Drats.

But, besides whining about it to Leslie a good bit (poor Leslie!!), if you saw me you would think everything is just fine.  And, really, it is.  It is just going to take longer than I hoped.  I think this part is intended to increase my patience as a human being.  It is sort of working.

My radiologist gave me a prescription to help with the herpes.  I see my ENT on Tuesday and perhaps he will have other suggestions. 

Hanging in there...This too shall pass.

Four weeks past treatment

Just a very short post to let you know that I am doing very well.  I have plenty of energy to see my friends, take care of the dog, and go on adventures.  I was in SF all day on Saturday, for instance.  I am much thinner and everyone says I "look good", which I think means "you look better with less weight".  Leslie even said I look hot.  Believe me, she hasn't said that in years!

Laura (Leslie's sis) really think my hair looks cute now.  Since, I have a big baldish area in the back—fully covered by hair above the radiation-burned line—my "style" looks different than usual.  I think it looks odd, but she swears it's a really good look.  Ok, I guess you can add that to the good things about cancer...improves hair style.

Well, is this better?

The mucus issue faded away about a week or so ago.  My mouth is much improved.  I still can't really eat without pain much beyond what I have been eating for weeks, but I can tell that will change very soon.

Essentially, I'm fine.  I'm resuming 'normal' life.  I will have a PET scan in a couple of months that will show if I am clear of cancer now.  I will post the results here when that happens.  Beyond that, the posts will be few and far between.  I do have one sum-up blog in me though, if you want to know what wisdom—if any—I gained by this experience.  Stay tuned for that...

The 10 best things about cancer...(well, this one goes to 11)

“Blog for a Cure” asks when you fill out your profile to name: What I Hate Most About Cancer.  However, there is nothing like: What have you learned from cancer? Or: What things do you appreciate from the experience? Something like that… So, I think that is unacceptable. As far as I am concerned, everything has a good side—cancer, in fact, more than many bad things.  And, I love lists.  So, here is mine:

1. Friends and family.  Just to feel the love and support is wonderful. I am sure my friends loved me before I had cancer, but they express it more now.
2. I feel luckier than ever to have such a beyond-wonderful partner. 
3. The cancer card is awesome.  Don’t want to do something?  Want someone to do something for you?  Just say the magic word and voilà!
4. I can now make jokes about cancer with no fear!
5. I love seeing all the cool technology that exists to cure cancer.  And to live in an age when it exists. (Which is really recent!)
6. I loved meeting a lot of incredibly competent and warm medical folks.  And, I really got to see the strengths and weaknesses of our medical system up close and personal.
7. I confirmed that what I thought intellectually about getting a life-threatening illness squared with my emotional reaction.  That pleased me greatly.
8. I got my Mac Air as a “cancer present”. It’s awesome.
9. I got to use the excuse that I had ‘chemo brain’ when I did something stupid for a period of time (but I don’t get to use it any more).
10. I’ve gained some wisdom, which I hope can be passed to others to help their bout with throat cancer go better.  (Go Jimmy!  I don’t know him, but via emails I have been communicating with his partner and him about my experience. He just started treatments today.)
11. There is no doubt that the fact that I now weigh my-only-in-a-dream weight of 120 is a huge perk.

Went to a restaurant!

I realized that I could probably eat sashimi, so we went to the local sushi place, Sushi Totoro.  The place caters to UCSC folks and is quite lively.  The bad news:  their fish was no good (particularly their ahi).  But, I ordered the sashimi sampler (ahi, hamachi, salmon) and ate it all, and very quickly I should add.  So, I can go out to eat again!   That said, Leslie is just going to go to a fish store and buy it.  Much cheaper and easier....


Then, I thought I could probably eat scallops cooked in butter, too.  Leslie cooked a bunch last night and they were wonderful. 

So, I am now up to 7 food items!

Just thought you would want to know that there is some progress.

Mucus/Mucous

Just wanted to drop in with this for those that don't know. 

Mucus: A thick slippery fluid produced by the membranes lining certain organs such as the nose, mouth, throat, and vagina. Mucus is the Latin word for "a semifluid, slimy discharge from the nose." Note that mucus is a noun while the adjective is mucous.

Now, I wrote correctly about my mucus, but most people wrote back about the mucous (using it as a noun) as if I had blown the spelling. I just wanted to point out that I had it right.

You can tell I am back to my normal self, right?

Side effect update

In this blog mid-treatment, I ran down the expected side effects. Now that I am almost two weeks past the end of treatment, I thought a rundown of where I am at is in order.

But, before I do that, I just want to remind everyone that my prognosis is excellent. I have over a 90% chance that I will go into complete remission and this will just be this really weird incident in my life. All my doctors are really pleased with my progress. There will be a lot of follow-up, of course. But expect to hear only good news from me on that front.

• Fatigue
  Yep, I certainly have this one. The docs say I won't be back to normal in that department for 6 months. I hope that isn't true. But, I am, indeed, quite fatigued. Normally I sit in my laz-y-boy most the day and read or watch TV. I've been watching the women's world cup, the Giants (those last two losses to Chicago were really no fun) and, soon, the Tour de France. I used to sleep about 7 hours a night. Normal now is 12 hours. I do take a walk every day, do exercises (stretching, sit-ups, push-ups, etc) and fix things that need to be fixed. Anyway, I am betting that I come back faster than six months. I am much too impatient for a long convalescence. I went downtown today and that was fun.
  
• Mouth sores/ muscositis
  Oh yeah, I certainly have this one. This is the problem that was actually supposed to get worse the two weeks after the treatment was over and I do think it has. But, all I can hope is that it starts improving because this problem severely limits what I can eat. Which is almost nothing. I have about five things I can eat, which is all I have eaten for about 5 weeks. It gets really old...And, of course, this problem comes with all that mucus.
  
• Neck burn exterior (and interior)
  Well the interior burn certainly happened; the exterior burn didn't. It was probably because I was already very tan in my neck (from the three months in Hawaii) and I followed a regime of skin care that they recommended to limit the burn. It worked.

This is about as red as it got.  The neck just looks tan now

• Hair loss where radiated (on the neck line)
  Yep, it happened. I don't think anybody noticed. But, here is a picture.
 

• Loss of taste, appetite
  You know my taste never really went away, it just got a little wonky. But, I certainly don't have much of an appetite except for those five things. I am looking forward to actually adding food and seeing if my appetite returns.
  
• Weight loss
  Well, this was a really strange trip. I had started at 149 (having gained four pounds intentionally). Right before my infection, I was at 144. Then, I started getting hydrated and I actually gained a ton of water weight. When I left the hospital, I weighed 156 pounds! At least 15 pounds was water weight as I hadn't been eating nearly as much as I had earlier.  Two days after I left the hospital, I weighed 135! And, it wasn't like I was peeing a lot. I think I lost it through the mucus. Anyway, I have been maintaining that weight since then.
  

 
So, I will let you know when my mouth improves. Beyond that, assume I am getting stronger every day. 
 
And, by the way, I got tickets to the opera on Sunday so we will actually get to sit.

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.

The booster knocked me out

I don't feel sick; I am not having nausea; my mouth is still pretty good.  But the booster shot to increase my white blood cell count—as I was warned—has just removed all my energy.  So, I am lying in bed, listening to Pandora radio and Wagner.  And sleeping a lot.

I should come out of this malaise in a few days...Until then, you can read Leslie's blog about my current diet (and her adaptations for herself.)  She is a much better writer about food than I am.  Plus, she takes pictures.

Second Chemo plus side-effect product gallery!

I am not doing a short version on this one, but beware that after the picture, it becomes very, very tedious.

Well, the second chemo is done and—surprise—I got the double dose.  Dr. McMullen studied the audio report and felt that the results were within limits so she wasn’t worried.  Given the white blood cell problem of that week, she decided to order a booster shot so that wouldn’t repeat and, therefore, I could get my final dose on June 17^th.  I went in to get the booster dose at 10:00 am today.  So far, no problems. 

I am feeling pretty wonky, though, from both the chemo regime and the booster shot, so I will be mostly prone or sitting today. The anti-nausea drugs in the IV are doing their thing and I feel fine on that count right now. My mouth is still doing pretty good and I haven’t taken anything stronger than ibuprofen for several days. Let’s hope that continues!

The radiology office is closed for the holiday, so my next radiation isn’t until Tuesday.  This means that my final radiation will be on Monday, June 20.  So the countdown is 15 more to go.

All my doctors say that I am doing much better than the average patient on this protocol.  It could be, partly, that my tumor isn't as large as some, so the radiation is somewhat easier on me.  But, I give credit:

• to Leslie, who is making sure I have a balanced, nourishing diet.
• to my friends Nancy H. and Nancy N., who have given me some very helpful advice and counsel.
• to myself, who is completely on top of what I should be doing and I am doing it.
• to ignoring a whole lot of advice that is out there such as “drink Ensure”, “don’t worry about nutrition now, just pour calories down”, “get a PEG tube”.
• and to all my little helpers…(see below)

In the foreground of the picture are the three things I often took pre-C—gas relief pills, Nasonex for my dust-mite allergy and ibuprofen pills when I have pain.  That's about it.  (This is where tedium comes in....)

In the background is everything I have to deal with my present situation.  To the left of the picture is all my teeth stuff.  I basically have to have excellent teeth care for the rest of my life in hopes of preserving my teeth from the affects of radiation.  As well, dry mouth could continue for some time, so I have various products to help with that (the sugarless suck candies in the blue bag, and a nice smooth small pebble to the right of the bag, something called 'Salese' to help get the saliva following, etc).  I first gently flosh, then use the waterpick, then use the electric toothbrush, then gently use the—yes—tongue comb. At night, I put flouride paste into my teeth trays (in the blue box) and sit there for 20 minutes letting my teeth soak it in. This will continue until I die.

Moving to the right is the skin-care products for the radiation burns that are coming soon.  I have used a product called Calendula lotion, which was recommended by the radiologist, since a week before the radiation.  It is supposed to limit how bad the burn gets.  I have aloe vera on hand now to ease any pain.  I also keep white vinegar around, because it works excellently to remove any pain for a "real" sunburn, so figured it might help here. However, it might not ever get bad. But, it can be.  Check out the next picture.  I also have some hydrocortisone cream for itching.

This is Jacques, who had a tumor about twice my size.  He might not have had the IMRT treatment that I am having (which helps to limit the burns).  Nonetheless, this is what I am tyring to prevent

To continue the tour, the next group of meds are for my mouth. In the wine bottle is my solution of salt/baking soda and water that I swish and gargle with dozens of times a day.  It helps with the sores and the thickened saliva. In front of the wine bottle is the Stanford mouth wash which helps with the sores and to prevent thrush. In front of the mouth wash is the lidocaine that numbs my mouth when needed for eating. To the left of that are some products to help the acid reflux, tinctures of slippery elm and licorice root (Not pictured: the heavy hitter, Prilosec). Licorice root is also good for mouth sores.  To the left of the wine glass is drinkable aloe vera,  which helps the mouth sores. 

The tussin is to help with the thickened saliva.  In front of the Tussin are pills if I feel a cold sore coming on.  To the right is Ativan, if I need help sleeping (and it also helps with nausea). To the right are my pain pills—both viocdin and oxycodone. So far, I have just taken 4 vicodin.  They are there just in case. 

Behind my pain pills are my anti-constipation products. Both the pain pills and the anti-nausea pills cause constipation, so I am prepared.  I do the prune juice thing and lots of water with metumucil and lots of fiber in other ways, too. According to my friend, Sharon, glyercil is the thing when you just have to get it out...In front, a little vaseline.

And, then,  finally, the next group is my anti-nausea medication, Zofran.  I have them in two forms, as solid pills and as melt-in-your mouth pills (thanks, Lynn—my doctor approved of you passing them on).

What a change! But, I gotta do what I gotta do.  It's working so far.

19 down/ 16 to go (radiation treatments, that is)

Short version:

I'm doing amazingly well and my side effects are all quite manageable now.  But, it will probably get worse soon.  Chemo tomorrow.  (Question: does anybody just read the short version?)

Long version:

So, I am near the end of the 4^th week and doing extremely well, really. I have got the eating thing now managed to avoid most pain, and I am not usually in any pain when I am not eating.  If only it would be this easy the rest of the way…

Adventures in ingestion

Short version

I am on a mostly liquid diet.  Things hurt that are surprising, but some things don’t hurt.  My relationship to food is completely different, but I am maintaining a balanced diet and haven’t lost weight.  I hope I made the right decision not to get a PEG tube in.  Leslie is wonderful as she helps me deal with my limited ability to ingest. I use drugs to help in the process.

My lover affair with watermelon is continuing.

Long version

No chemo today

My blood cell count went down to 1.2 so the chemo was cancelled.  Dr. Yen said:  "It's nothing to be ashamed of, but you can't handle the chemo well."  Damn!  A chemo failure.  Anyway, he says he fully expects the white blood cell count to rebound by next week.  I am not sure why that is the case, but he seemed confident, so we shall see.  They can do a booster shot to help if necessary, too.  They will decide next week if I will get a double dose (which I doubt given the situation) or move to single doses.

In the meantime, he reviewed the audiologist report and really thinks that it isn't a big problem.  The drop-offs were not that large, and my subjective report is that the problem is minor.  So, I will stick to the cisplatin.

Off to a movie...

Chemo Surprise

So, I had a double dose of not good news regarding my chemo.

First, my white blood cell count has dropped to 1.3, which is too low. (It started at 10; it was 3.5 five days after the chemo),   They want it to be at least 2.0. I was a little surprised because I feel so good, but he (Dr. Yen, who is the substitute for Dr. McMullen, who is on vacation) said that a lot of people don’t feel any change with this sort of drop.

The other bad news is that my hearing test showed a large drop-off in my high-pitch range.  (For those who don’t remember, my chemo drug, cisplantin, is an audio toxin.) I didn’t think that sounded that bad, but the doctor was very concerned as that is the first thing to go. Loss tends to be permanent so they are vigilant in monitoring it.

So, what to do?

1. Continue on the plan and if next dose shows more of a drop-off of hearing, stop the drug (but then I had 2/3^rds of a full dose and much damage would have been done).
2. Change to single doses weekly and, if the hearing continues to decline, stop it earlier (to arrest the level of damage, but the efficacy of the treatment is less). 
3. I could change to another drug right now. (Cetuximab - Brand name: Erbitux) One of the biggest problems with it is horrible rash/acne.  

He asked me if I had a preference and I asked him to make the call.

The doctor was undecided on what to do tomorrow. He would consult with Dr. Seftel (the ENT) about the audio problem and he would ponder it a bit.  The plan: I will go to my appointment tomorrow, but if the white blood cell count is still too low (and I am betting it is), they might delay the treatment for a week. If they go forward with it, he said he would make up his mind what to do tomorrow.  Hence, chemo surprise.

My radiologist, in the meantime, gave my lidocaine to numb my mouth when I eat so it doesn’t hurt. Yay!  And vicodin as needed (no more than 8 a day!)  If I am taking 8 a day, it is time to move up to the next level…Right now, I am planning to just do the ibuprofen and lidocaine, but it is nice to have other drugs in the wings…

Update (after 12 radiation treatments)

Short version:

I have had 12 radiation treatments and my ability to eat has been greatly reduced.  Only very soft foods are possible now.  Nothing acidic or spicy, no coffee or alcohol, or it irritates my very sensitive mouth (salt is okay but I barely taste the salt; sugar tastes like salt so I use that sometimes). Plus, the chemo gave me acid reflux so I wanted to cut all these things out in any case. My pain is controlled by ibuprophen which, in general, works fine.  On the 1-10 scale, the pain is usually in the 2-3 range, if at all.   My mouth is dry or I have very sticky saliva, which often is easier to spit than swallow. I carry a spittoon and water with me wherever I go.  Chemo is coming this Friday.

Mentally and physically and vigor-wise, I am totally my usual self. 

Long version:

My new look complete

I now have a scarf to go with the hat, so here is my complete new protect-my-throat look:

Thanks to Angela for the scarf and to my French friends Judith and Agnes (daughter and mother) for the scarf-wearing lesson last year. It has come in handy!

What's next

I thought an overview would be helpful now.  I want to remind everyone that my prognosis is great.  I am not going to die of this thing, so you need not worry about that. However, to make sure that I don't die, the treatment protocol is quite grueling.

The bottom line is I feel normal right now.  The side effects of the first chemo have ended and I am back to feeling great, no pain or problems.  This should last through the week and into the next.  However, I have read a lot of blogs of people who have had the same treatment protocol and I know what is coming and when. The side effects of the radiation don't tend to become prominent until towards the end of the third week.   At that point, on May 20th, I will also get my next chemo.  So, count me out of partying from that point until somewhere around the middle of July.  Even then, I will be far from 'normal' eating and energy-wise.  (Jess, I am planning to come to your party if I am at all able, though.  Graduating!!!  Come on, I really don't want to miss that.)

I will have four more weeks of treatment after May 20th, and it will become progressively worse. At some point, I will not be able to eat solid food. I will lose my appetite. I will have a very dry mouth and it will be a struggle to stay properly hydrated (but I can drop by the chemo lounge for hydration as necessary). I will be very tired.  And I could have a host of other problems.  Many people end up with a feeding tube if they lose too much weight and to make it easier. Leslie will make the call on that one.  I will slowly start to recover after my treatment's end, on June 17th.  But, it will be about a month after that before I will really have great progress.

I don't plan to blog again this week because there will be no big change.  Just know I am my usual happy, perky self.  Having lots of fun with the dog and Leslie and friends. 

When I hit that bad 6-week period, what can you do to help?  Send me things via email that make me laugh.  I like black comedy, so no holds barred. Offer to take the dog from Leslie so she can get a break from time to time. And, we would love it if we can get some volunteers to help us quickly and painlessly move back into our home on the afternoon of June 15th (it's a Wednesday.)  It shouldn't take long, as we don't have much.

Ok, that's it!  Signing off for this week at least.  I love you all!

Awesome radiation machine!

I am sure that this will change when the radiation burns show up, when my throat is aching, when I and can no longer eat solid foods, and my mouth is full of sores, but I love my radiation machine!  I feel like I am in a sci-fi movie whenever I am there. (Leslie thinks, specifically, sick bay on the Enterprise.)  Yesterday, Leslie took some shots of me and the state-of-the art machine. (For those who don't want the words, just the pictures, scroll down...) The reason the Stanford radiologist said that the treatment was just as good in Santa Cruz is because they have the same one.  The technique is called IMRT, which uses three-dimensional imaging.  Here is the Mayo Clinic’s description of the process.

Because this machine is more accurate and more nuanced, my neck area will not be the “scorched earth” effect of the traditional one-dimensional techniques and is the state-of-the-art for three-dimensional techniques. (I don't know what I am talking about, so don't trust this stuff, but I think it is true.) The side effects are all the same, but just less.  Here’s hoping! 

The radiation is amazing!  I can barely see the tumor anymore.  It was very red and very easy to see five days ago.  I gather I am going to have a pretty big divet in my throat.  It will heal.

By the way, I love my radiologist oncologist, Dr. Kim.  We both have puppies so we did dog bonding.  And all the staff down there at Santa Cruz Radiation Oncology are great. 

I hope you enjoy the photos!  I love them. If you want to (re)read the companion blog about getting this all set up, go here. Thanks, Leslie!

A good view of the formed-to-me head rest.

The mouthpieces and tubes are the first to go in.   They are protecting my fillings and tongue with this get-up.  Mask on the way...

The techs synching my mask down. The main thing is they have to exactly recreate my position daily and I can't move.

I'm holding tight on to ropes on each side that keep me firmly in place, with the comfy knee thing to help my back.  To the left are the two devices that take the images while the zapper does its magic.

Come on!  Is that not sci-fi? I have gotten used to the mouth piece (just don't put it too far down the throat is the key!) and I have never minded the mask.  Yes, I get to keep the mask.  It will be great to use in some future Krapp Family Players production, right? (For those who don't know, that is the nickname of the Karst home-theater group in which we have re-enacted many a musical.  I think we should do Dr. Horrible next.  This will work perfectly for one of the Evil League of Evil!)

My view when the zapper or imagers aren't over me.  See the green crosshairs?

I'm all set to go! Let the zapping begin.

This photo of the zapper can't begin to tell you how cool it is. When it is directly over me (they usually zap in about 8 positions), I get to see the ray change and it is absolutely trippy.  The sounds that come out of it are also really cool.  It just mesmerizes me.  And, it is healing me.  Gotta love that zapper.  (I get that I am saying this in week one, but truly, it is a wonderful, wonderful thing.)

The rad tech monitoring my treatment.  Five screens.  Impressive.

This is my new look (or part of it.) I have to try to keep my neck out of the sun as I will already get plenty burnt.  Darien lent me one of her hats (thanks!) to help.  Angela is giving me a scarf.  When Darien and I worked together at Kresge, the students often couldn't tell us apart—the fact that we do not look alike notwithstanding.  I can imagine that if I walked up there today, people would get confused again.  They are a bit lame that way.

The other, better (?) chemo lounge

As I mentioned, Lynn found my chemo lounge to be not up to snuff.  I visited her at her chemo lounge to see this "improved version".  As promised, they did have a foot masseuse.

It does look nice...

Lynn also promised wifi, and here is the proof of that

In our chemo lounge, they have the chairs facing each other so we can all chat.  There are other areas that are more private for those don't want to interact.  But at this place everybody is along a wall, old-time beauty salon style.  All you have to do is take away the IVs and add the hair dryers and, voilà, you have the mental picture. (Leslie didn't take the picture—and she is the photographer of these photos—for privacy concerns, of course.) But here is their view:

Now Lynn pointed out that the decorations were a little bare-boned compared to  the usual array of plants and food they have laid out.  But, still, I would rather look at people. And, I am sure it is usually much prettier than my place. But, hey, I like to talk so I am just fine with my juice joint.  Isn't it great that we both happened (via insurance, of course) on perfect places for ourselves?

Chemo lounge photos

These pictures should have been with the chemo lounge entry, but Leslie had the card reader in LA.  But, it gives you the general picture.  It was a little chilly in the place, so I did generally have a blanket.  Beyond that, it was just hanging out working on the computer like at home.   There were four other chairs in this room, each occupied by a very nice woman.

That is my new Mac Air on my lap.  Leslie let me get it 'cause I got "the cancer".  Isn't she sweet?

Generally, I typed with one hand so as not to disturb the IV, but it was quite possible to use both hands.

I spent so much time in this bathroom, I figure I should take a shot.

Anti-nausea drug management

So, I am much better today.  The reason is that I didn't take that drug that controls for nausea but turns you into a crawling zombie (walking wasn't an option).  The name of that drug is prochlorperazine (generic for compazine).  I don't recommend that drug.

Far better, so far, has been the ondansetron (generic for zofran).  Zombie isn't one of the side effects, just constipation, headaches, hives, itching, breathing problems, etc.  I have been trying to manage the possible constipation via metamucil and lots of liquids.  I haven't had the other side effects, so maybe I will be lucky. This particular drug is expensive, so Health Net did a weird thing:  my doctor prescribed 30 for a month; they only gave 9 for 22 days. My doctor had warned me about this problem, so I got her office advocating for more.  They succeeded, but Health Net charged me a $35/copay for the extra instead of the $5 copay for generics.  Thus, I just had to spend a half an hour getting my money back from Health Net.  I was able to get $30 of it back.

Speaking of money, looks like my little fender bender (it was really just a tiny dint) is going to cost $1269.  The whole auto repair racket is just behind the tow truck racket in my estimation.  But, it is what it is.  At least I got my 30 bucks back.

Doing Better

I had my first radiation dose and it went fairly quickly.  I am getting better with the tongue thing.  It didn't bother me much. The radiation only takes a short time.

The drugs to control the nausea are just really tiring me out.  So, I am going to go watch some favorite video...and space out.

The fun is over...

I mean up to the point that my treatment started, there were lots of interesting and new things.  Got to meet a lot of people.  Got a lot of love and caring and had the capacity to really appreciate it. Had plenty of energy.  Yes, last week was not good in many ways, but I was still "me"—just the anxious version.

Today, I am not me.  Tired.  Listless.  But, I am up for watching movies.  I just watched "What About Bob?"  Well, Ellie watched it and I slept through it.  But, I saw a few key scenes.  I only plan to watch things I know so the sleeping won't matter...

Anyway...

Hanging in the chemo lounge

For those who haven’t been in a chemo lounge, you have missed something!  I understand that some chemo places give you a private room.  But, I think this collective experience is probably the norm.  Basically, the room is filled with a number of Laz-y-boy-type chairs (think Friends—I can just imagine Joey and Chandler with their IV drips now…) Very comfy.  There are several other people there getting chemo at the same time.  Some people chat a lot (I was chatty), some people sleep, some people read, some people write a blog (that was me when I wasn’t chatting).  It’s fairly mellow, but with a sad undercurrent.  How could it not?

I love lounge chairs.  In fact, in my French 1 class I wrote these lines when describing my living room: Ma chose favorite dans la salle est mon grand fauteuil noir.  Leslie n’aime pas la chaise.  Mais, je vais mourir dans le fauteuil ! (translation :  My favorite thing in the living-room is by big black lounge chair.  Leslie doesn’t like the chair.  But, I am going to die in the lounge chair.)  Anyway, I was comfy.

Kendra was the nurse who tended us, filling up our IV with various things.  First, a lot of hydration, then two anti-nauseous drugs, then steroids that maximize the effects of the aniti-nauseaus drugs, then the cisplatin—the chemo drug—followed by one more bag of hydration.  The day took about 6 hours.  The anti-nauseous drugs are supposed to last 2-4 days.  They fool the censors in the brain into thinking you have not just ingested a bunch of poison.  I like Kendra.

I was in a room with four women.  I went to the restroom about 15 times, carting my little IV with me…  The three other women went, collectively, 4 times.  I felt like a bit of a freak.

The place has a refrigerator with juices and sodas and water and lots of treats and chips and cookies.  Help yourself. I took a bag of sun chips—the French onion kind. They also have a lending library if you forgot to bring a book or something to keep you occupied.

My friend, Lynn, dropped by to say hi.  She’s has been going through the same experience for months, so wanted to lend her support.  She found our lounge wanting.  At her joint, they have a massage room and a roving foot masseuse.  According to her, it is a much prettier room.  I am going to go on Thursday and see how the other half live.  But, I was fully happy with the accommodations.  Also, I got a brief visit from my friend, Angela, and her young son.  Kids aren't welcome because they are germ carriers, so that was a quick visit. I appreciate the effort from both of you.

It really didn’t feel like anything during the process.  And, I kept my date with a friend after to have a cocktail. (I didn’t drive.)  I felt just fine.  We took Zig to the beach and all was well with the world yesterday.  Those drugs to control the poison must work.  Ok, I was a little loopy, it is true.

I sat by a lovely woman who broke my heart.  I didn’t ask her if I could blog about her so I am reluctant to reveal any telling details, but she has been battling cancer for several years. Originally, it was a cervical cancer diagnosis, but she is now dealing with lymph involvement.  She is 42 with two pre-teens and a husband. You can just see in her eyes how desperately she wants her life back, and the fear that she may never get it. We talked a lot about everything – her life and passions, what she misses the most, and the strain on her family, her employment situation and fears. I left there not worried about me, but truly worried about her.  Her course of treatment will be soon done. I am very happy for her that is true. If you read this, I am rooting for you!  (ed note Jan/2015:  We became friends.  I would occasionally drive her to an appointment or pick up her kids from school when she or her husband could not.  She died.  She made a lovely video to all her friends for her memorial service.  She had a lovely bit about me, "the last friend that I made."  She was just one of several of my friends who died from cancer that year.)