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.)