Hurry Up & Stop

Early last Friday, long before the rising sun, you would have found us waiting in line for canned hams. We had a tip-off that a new shipment had arrived from Voroshilovgrad and I wanted to make sure that old bitch Burundukov didn’t buy them all before any other comrades had a chance. As I stamped my feet in the dirty snow Echo Golf turned to me, looked closely at my face and said –

“OMG you are getting the rash! The rash from the Cetuximab. It’s working.”

Developing a rash is indicative of the chemo working well. Over the weekend the affected area enlarged and I got more spotty. It looks like I got sunburned and then rubbed poison ivy or nettles all over my face. My scalp itches and when I scratch it gets very tender. Forget about shaving. Apparently I will have the rash for the duration of the treatment. Part way thru it is meant to calm down and hopefully, upon cessation of treatment, go away. It says here…

Today was my second round of chemo and my first round of radiation. I slept like crap last night but don’t feel too bad. We head off to the U.T.S.W. Stemmons Center. In the lobby is a giant, orange, glass sculpture by Dale Chihuly. I’m not very fond of his work but this piece is pretty impressive rising over two stories high. A friend of ours had treatment for breast cancer here and grew to loathe the piece. I can imagine that happening. It’s too fucking whimsical for cancer. They should get Damien Hirst’s The Physical Impossibility of Death in the Mind of Someone Living. To wit a 15′ long Tiger Shark immersed in formaldehyde – now you’re making a statement.

We’re about the first in the waiting room upstairs. Jerry and another nurse walk in and call out peoples’ names. They usually call two at a time. This goes on all morning. There are a lot of sick people in this room. Jerry draws blood for my lab work. He’s quiet today. A chaplain as well as a minister, he had to visit two families last weekend who had lost loved ones.

Back in the waiting room. Some people look very poorly, so near death you wonder how the hell they keep going. Some have given up on how they look and are in sweats or t-shirts and work-out shorts. Some women have scarves on their heads. Occasionally a couple will walk in and you wonder who is sick and who is caring. Some people come in on their own. I imagine some are there to get on with it get well and move on. Some are people who appear lost, fragile, alone. A beautiful old lady came in this morning with a great white and red outfit on. She looked marvelous. She wasn’t going with a whimper.

We are called into a chemo treatment room. This time the infusion part will be only an hour. But it always takes longer. The nurse doesn’t mess about and slams the IV in my wrist. Here comes my saline, then my happy Benadryl and finally Cetuximab. I nod in and out of sleep. No big deal – we’re old hands at this now. Moving on.

We go to Dennys to eat. I have a Santa Fe skillet which is chorizo with jalapenos, peppers, mushrooms and potatoes. Two eggs, whatever way you want them, are on top. It is good, maybe my sense of smell is returning. I like places like Dennys. To me they are so innately American. The diner, the hot rods, girls with letterman jackets, packs of cigarettes rolled in t-shirt sleeves. The imaginary home of my youth.  i.e. American Graffiti meets Taxi Driver.

We head back for my radiation appointment which is in another building. I don’t know why but the waiting area for radiation is pretty small and because they were closed for Labor Day it’s getting pretty full with people catching up on treatment. One woman has had her last session and leaves awkwardly holding her restraint mask in one hand.

Another man has a hole in his neck and can’t really speak. An Asian woman and her daughter arrive. The mother is dressed in a pink robe. The daughter is in a very smart black dress. The mother looks like she would rather be anywhere else. Why did she just appear in her robe? The daughter is trying to care for the mother but you can sense that the mother doesn’t want to be cared for, or maybe not cared for in public. No room for airs and graces here. Cancer – a great equalizer.

I am called in for treatment. I walk past a veritable Mission Control of monitors, dials, switches. The radiation room has a door about three inches thick. It is very heavy. I lie down on the very narrow positioning table. A machine that costs many millions of dollars lurks nearby, its green laser guides cut the dimness of the room. Robotic surgery, restraining masks for radiation. Science fiction stuff this – science fiction.

They put on my restraining mask and because it is my first time we have to perform some measurements to check the mask, relative position etc. I have about three inches of table either side of my body to place my arms. You must not move. They place a white foam lollipop in my mouth – it keeps my tongue in the right place.

Radiation starts. The lights dim in the room, massive toroids bursting with death-ray rotate about my head. They start the music. New York, New York percolates through the pinging of alarms, the shuttling of stepper motors and the rising whine of generated energy.

Like the Gimp I lie immobile, a foam lollipop in my mouth trying to figure out how the hell I got here.

Start spreading the news, I’m leaving today

And We’re Off

This past Monday I had my first dose of Cetuximab. This is the chemo I am getting as part of the trial I am on. Eight weeks of Cetuximab costs about $30,000.

The Oncology waiting area is quiet when we arrive shortly after 7:00a.m. I have some blood drawn for lab work. Jerry is the nurse who draws the blood. I’m glad it’s Jerry because I saw him come out a couple of times and the regulars, who know him, brightened up on seeing him. He’s been doing this for thirty years. He gets a needle in like no other, fast, painless, perfect.

Jerry goes on missionary trips to Europe. He passes thru London. Jerry asked me if I knew Brixton. Of course, used to live near there. I told him about my experience when the Police ‘De-criminalised’ pot in Brixton. We were driving thru late on a Saturday night taking my nephew home. The streets were packed with people buying and selling pot. It was insane and personally I found it quite scary. Not sure if that experiment continues – I doubt it.

I am called thru for treatment and Eva joins me. I’m grateful she can come with me to most appointments. The chemo treatment rooms are about 15′ x 15′. There is a TV on the wall, two lounge chairs and for the patient a large reclining chair with swing over work surfaces. You can bring your laptop and work if you want. You can also watch TV or DVDs. Down the corridor is a break room with snacks and drinks and a microwave if you happen to bring your lunch. There is an air of quiet, efficiency.

There is a some delay because the person in charge of the trial is missing and needs to see my lab results before she gives the go-ahead. We wait a lot. In general we wait a lot. If they say your appointment is at 2:00p.m. you might be called around that time and you think “Great – we are getting on with it.” But all they do is take you to a different room, ask some questions and leave you to wait again for whoever you have to meet. I normally expect about an hour to elapse between the appointment time and the actual time I see someone.

Devrie is the nurse who is going to carry out the treatment. First she tries to get an I.V. in me, but apparently I have ‘rolling’ veins. Rolling veins are veins that run away from the needle, thus making it hard to penetrate them. Another nurse is brought in and finally gets plugged in.

Because of the nature of Cetuximab, I am given liquid Benadryl. This helps prevent any allergic reactions which, in rare cases, can be life-threatening. Liquid Benadryl also makes you very, very sleepy. I am awake as the bag of Cetuximab is introduced into the I.V. but fall asleep soon after and stay asleep for the full two hours the treatment takes.

I felt fine that day. The next morning I have a terrible headache. I forget that I have a swarm of killer chemo warriors in my bloodstream and am surprised when I feel nauseous or get the horrible headache or just want to lie down. I keep thinking I am ‘well.’

After the surgery I thought that the worst is over. I’m starting to feel that maybe we have just begun.

The Emperor of All Maladies

We went to a work event of EG’s the other night. Present were a bunch of people who know me and know I have been sick.

Some held me like I was a lost soul out on the ledge. “You’re going to fight this Les! I know you can. We’re all behind you. You can do it.”

Others would  look at me with great concern and then hug me tight. “Come here. (tight hug) It’s going to be OK Les.”

I would be lying if I said I didn’t appreciate their concern. When there have been low times it’s been their affection and support that has made everything bearable. It really has.

But in some respects the attention makes me uncomfortable. I feel like saying – “Oh it’s just a little cancer. People get it all the time. Now how about you? How are the kids?”

When talking to people with cancer it’s important to remember that a diagnosis of cancer is no longer a death sentence. Of course there are many cases where the illness is discovered at an advanced stage or is a particularly egregious form and then, to some degree, the outlook is bleak. But as the medical arts progress there is more and more recovery and death is no longer the inevitable outcome.

I Googled something like What to say to people with cancer. I was surprised, maybe I shouldn’t have been, that there were so many pages with that exact title. Some were written by people with cancer, some by professionals and lots by idiots who have no business opening their pie-holes.

There are quite a lot of angry cancer patients out there. Some can’t accept that they have been randomly selected to have their ass handed to them. “Why me? What did I do to deserve this?”

Others are more philosophical. “Somebody’s got to get Merkel Cell Carcinoma. why not me?” I identify more with these folk. I don’t believe, natch, that I got cancer as some kind of punishment or that I have been unfairly burdened.

Even the most abstemious, Mennonite farmer can acquire Basal Cell Carcinoma. The 18th President of the USA, Ulysses S. Grant, was struck down with throat cancer at the age of 63. A mere five years older than my bad self. Unassumingly he hoped “that nobody will be distressed on my account.”

And so I muddle through each day. Part ambivalent to my malady, always intrigued by the multitude of procedures I must endure, but mostly comforted by my loving wife and friends. I live to annoy for years to come.

 

Sick & Thriving

It’s been a month to the day since I had surgery. The first two weeks were pretty awful. It was hard to sleep, eat and drink. But the last two weeks have been pretty good.

For one thing I look pretty healthy. I’ve lost about 18lbs and have been eating less, hardly drinking any booze and generally taking it easy and getting lots of rest. My appearance and sangfroid seems to unnerve people. I feel as if they are looking at me and thinking….

“Cancer? The dude looks fine. WTF? I look worse than him! Shit – maybe I have cancer? OMG I need to sit down. I have fucking cancer!

I should ripost  “I’m sorry I don’t look sick. I know you can’t see any scars. I was pretty bad after surgery. You should have seen me then when I had tubes stuck in every orifice. Then I looked cancery. Now I just look gorgeous.”

I remember when my former neighbor had cancer. I was in the middle of getting divorced. I had moved out before I knew she was sick. I had to call her about something.

“Hi Linda, how are you doing?”

“I’m fine except for the fact I have fucking cancer!”

“Yes, I know. I’m sorry. I don’t know what to say. How are you?”

And so it went. All I could do was sound like an idiot.

She never liked me anyway. I’m not saying that gave her cancer, but you have to wonder.

What Just Happened?

Funny, after visiting tonsillectomyrecovery.com and discovering that my pain arc was the same as most tonsillectomy patients, I started to feel much, much better. Overnight I changed from dreading every swallow and attempt to eat, to being ok.

I stood in the back yard late Monday night and thought “I feel normal.” I thought about how I felt before surgery and how I felt then. I was the same. I am slightly lighter in weight, I have some discomfort in my throat, but overall I felt the same. I hope the worst is over.

On Tuesday I met with my surgeon and he reported that he was very, very happy with how things turned out. Out of the forty odd lymph nodes he removed, only two were cancerous. There was, of course, the tumour in my tonsils, but he said that he was confident that they had removed everything that was bad. The margins between good and bad were good, the lymph nodes had not burst out of their capsules. It was all, all good. We arrange to follow up in two months.

Wednesday I visited with the Oncology team. UT Southwestern believes in peer review. Before my surgery Dr. Myers had to present his case to other surgeons, oncologists and the janitor etc. They all reviewed the options and all agreed on the procedure. Before meeting with me, Dr. Wardack, the oncology intern, had sat on a board that went over the biopsy of all the yucky stuff they cut out of me. So he and Dr. Chen, my oncologist, already knew what their treatment course was.

They invited me to join a trial of a chemotherapy drug. This is a drug that has been around about 16 years but has never been used for neck & throat cancer. The drug, theoretically, delivers a therapeutic dose only to the cells in the area of concern. There is a chance of side-effects but hopefully nothing fatal 🙂 In the trial I either get the drugs or I don’t. I asked about the placebo effect on those getting the drugs but they said that at this stage it is not a factor.

Either way, I get state of the art treatment. Next week I have to go and have a mask made that fits over my face and secures me to the radiation makin’ machine. A team of physicists/ Dr’s etc come up with an algorithm as to where the radiation is pointed, at what angle, for how long and what strength. Before they zap me they run a test on some kind of gel that emulates the properties of the human body. If that all checks out they start treating me.

I will have treatment Monday thru Friday for six weeks. I have no idea how I will feel during this exciting new chapter of my life, but I cannot wait to move on.

Not alone.

I am so grateful for all my friends and all their offers of support. And Eva just keeps on being the most amazing caregiver. Nothing is too much trouble for her to do and I try not to abuse that.

But until somebody has gone through what you are going thru they can’t fully imagine what it is like. I have put off looking at any Internet information regarding my illness, it is my experience that only the whiners and nay sayers post so you get a very lopsided view on matters.

Tonsillectomyrecovery.com is different. Here people share their experience and give tips as to how to make life a little more bearable. I found the pages that cover each postoperative day and what to expect were very useful. I was beginning to think I was the only one with earache, toothache and night drooling. But it’s common. The ear and tooth ache are referred pain from the throat wound and the drooling is because your body can’t bear to swallow even when you are asleep so saliva builds up in your mouth 🙂

It seems that I am approaching hump day and hopefully things will be getting better. I wish I had read this before the surgery. Eva did tell me that I should get a humidifier but I blew it off – sorry honey. Also,forcing yourself to wake every four hours and take medicine keeps you in a relatively pain free state. I would try and sleep as long as I could and then wake with the most awful pain in my throat. There are lots of tips. I have read this more than a few times that women having to go thru this would rather be birthin’ some baby. This is not the tonsillectomy of a seven year old.

In case you are interested here is a discussion of the issues I am having right now and yes I want lots of poor Leslie. XL

Tastes like chicken – not!

Hard to believe that seven days ago I was just about to go into surgery. Would I have had surgery if I knew how painful it was going to be? Yes, sure, however you can’t understand how painful it is until you have it. If I was told a year or more from now that I had to have surgery again I would think about it a long, long time.

Today is the first day where I have woken up, and even though the pain is acute first thing in the morning, I really wanted to get up and get on with something. I had a pretty good night’s sleep. I bought a new Tempurpedic pillow as I find them very comfortable, but I wake up in the morning with it covered in drool! I know – it’s lovely. I’m hoping this is a temporary affair as I don’t sit around drooling, only when I’m asleep. And night sweats, still sweating a lot at night. And my blood pressure is scary high.

I have to say that my sleep apnea is much improved, as promised. There are a few noisy, phlegmy ticks I can hear that disappear when I use the CPAP machine. I have to get all my various cavities and channels healed so that I can get some good nasal irrigation going. I have a Netti pot with some saline solution mix that I am anxious to use as I hear it cures all kinds of allergy maladies. I tried it once and I was nonplussed – constant use is the answer supposedly.

The worst impact of the surgery, after the pain, is that I cannot smell or taste anything except the horrible syrup with the Ibuprofen or Vicodin. Don’t even taste that I just know it’s crap as it burns the areas where I had surgery. So not tasting or smelling food. This was meant to happen when I had radiation, not after surgery. Numerous nerves were cut during the operation, but they are meant to regenerate. I hope that is the case because, as you know, I love to eat nice food and smell goes hand in hand with taste.

Would I rather be alive and not have taste? Of course, but if I can’t drink and eating gives me no pleasure I am going to have to create a totally different lifestyle because that sounds pretty sucky to me.

Don’t get me wrong, I’m very grateful to be alive and on the road to recovery. I just feel unsure of what the future holds. I’m betting it will be awesome though in some way I could never imagine.

 

Ketch-up

I was going to try and remember everything that happened since surgery and have an entry for each day but it sounds like too much hard work and would make for dreary reading. Here are some highlights.

As I healed I had less need of the various tubes inside my body. The nurse or Dr. will prep you for removal until you are at the point where they just have to yank it out. “OK deep breath…” and the 20′ foot long tube down my nose is coming up my oesophagus, up my throat, turning in my nose and “Holy shit look at that bastard! I can’t believe you stuck that in me!.” It hangs limp and slick. Die gut sucking snake – die!

Then there was the catheter in my penis. I don’t know if it was better or worse to have the most beautiful nurse in the hospital perform this task, but I was distracted, at least, by Kasi’s beauty. She surely is a Nigerian Princess of stunning good looks and a placid demeanour.

I have no idea how they deflate the little poodle balloon but it is done and then “OK deep breath…” and there is a little resistance, rubber on dry urethra… but if you really pull, OMG, it comes out and there, all over. Smile for Kasi.

drainsThe drains on my neck were attached with sutures. Imagine hanging a couple of goose eggs from your neck using fish-hooks to attach them to your skin. They are firmly held but it hurts and they swing about and get in the way and you get paranoid that you will do something and tear them out. So you move about as if doing some lame, slow motion Tai Chi. I brush the horses tail.

I had the drains removed yesterday. Dr. Myers’ P.A. removed them. Snip snip snip snip on the sutures and “OK deep breath…” and down they slide out of my neck and “Jesus Christ look at those fucking things! Damn.”

This morning I finally took off all the little bits of dressing, misc. pieces of surgical tape and other detritus of the operation and had a shower. Oh that felt good. And I had a pretty good tooth cleaning although I am leary about brushing way back in my mouth. Some clean clothes and I felt half decent.

Only thing – I look at my face and my non surgical side is all plump and my chin flesh is fat and hanging down and my surgical side is lean and cut back and am I going to look like this from now on? Turns out it’s probably more drainage so get to go in again this afternoon to have it looked at.

So I’m sitting here writing this. I feel stupid and cocky in some respects for being cavalier about the whole affair pre-surgery. Who knew I would have a 6″ incision on my throat? Who knew that there was more tissue and lymph nodes affected? I had no idea that I could feel so much pain one minute and then within half an hour be reasonably ok, thanks to my friend Morphine.

On reflection however, by being dumb and just wanting to get on with it I didn’t have a pre-surgery wait where I was anxious and full of fear. God knows I have times now when I am more anxious than ever. But what really helped is the streams of good wishes, love, prayer and healing that my friends all over the World sent me. Thank God for the Robot but you gotta love the Love.