Ruminations

I've had a few complaints! Seems that I left my readers hanging with the last post as I was ready to go, but still in hospital. Well, as with all great stories - the Da Vinci Code, the Lone Ranger - it's good to end a chapter with a cliff-hanger. All was indeed well. My body had righted itself with the help of a bunch of drugs and fluids, and my boys came to collect me first thing Sunday morning. The weekend was a joy actually; the weather was perfect, the family was together, we had a ball. Funny to see how my thirty-odd year old sons reverted to acting like teenagers while they were here without their own partners to keep them under control.
Ruminations is the title of this post - a series of disconnected jottings. Actually the title is very apt given that for a couple of days while in hospital I was actually being fed through the new tube. So the food was steadily going in without any particular effort on my part and I was making like a cow, digesting and having lots of time to think. Ruminating, geddit?
Given the really exciting stuff that occurred last week, I did leave some stuff out. I was told to expect nausea from the chemo and it did arrive with a vengeance on the Wednesday. I had a few technicolor yawns that day, but it seemed to pass quickly - or at least became overshadowed by bigger events.
It transpires that what I actually had was a vasospasm, some kind of allergic reaction to the 5FU drug. Makes an EKG readout look exactly like a heart attack, or so they said and I believe them.
I have received so many cards, messages of support, emails, comments, everybody's kindness is really heartening. Today I received a package from a work acquaintance in China. She has done lots of research and sent me some Chinese herbal remedies. I'm not sure I should take anything else while on chemo (although the chemo-only record is a bit suspect at the moment), but for recovery after and particularly after the surgery they should be great.
I'm back in to work at long last this week and feeling pretty good. The radiation is starting to make me feel fatigued as promised. I think I should be able to share out working from home and working at work for a few weeks while I'm on treatment and be reasonably productive.
So now I have a short term but very important goal - my younger son's wedding on July 8th. It will be a close run thing as my treatments don't finish until June 28th and I may feel a bit grim at the end of them, but that's what a goal is for, right?

Well, what a strange and scary week it's been.

I actually tried to sit down and write come notes yesterday and the notes look a bit like a spider with ink on its legs. Compare that to my clouded mental state and this could be a very confused post. Ah, well, here goes.

Monday 22nd May
Monday my routine started in earnest. Went into the oncology dept to start the Cisplatin cocktail. That's the one that should cause my hair to fall out and give me that babysoft look in a few weeks. Then I got hooked up to the 5FU. That goes in over a period of 96 hours. As readers will note from the forthcoming posts, this stuff is very well named. Later that afternoon, I also had the first radiation session, very anticlimactic, just 5 or ten minutes strapped to a machine that looks like something from the bridge of the starship Enterprise.

Tuesday 23rd May
Tuesday was much of the same. Didn't have to go to chemo as it is being pumped into me, but a short radiation visit. Nothing to report.

Wednesday 24th May
OK, here's where life gets really interesting. And precious I may add.
I went in for radiation as planned. Came home again. Later that day. though, I started having chest pains, tightness around the heart. I called my chemo doc and he advised a visit to the emergency room. We zoomed over to BI and reported with chest pains and shortness of breath. Let me tell you, if you ever want treatment for anything in the ER, just present with CP and SOB. They'll have you in there so fast it will make your head spin.
Anyway, scary bit now. I was shortly confronted by three or four doctors, all younger that my sons, all of whom earnestly informed me that I was having a heart attack. Ah. Really? Did I let you know that I'm not quite ready to go yet? I had the strong feeling that I might not wake up from this particular dream. Kath was there, somewhere in this mist of people and emotions. She gave me a hug and a kiss which on it's own is enough to give me the will to live.

Thursday 25th May
The heart attack turned out to be a false alarm. They put catheters in my heart arteries and declared them as some of the healthiest they had seen in years - bit of hyperbole there. It seems that the 5FU has caused my heart sac to become inflamed. A very rare side effect according to my chemo doc, but one which blows the trial that I'm on sky high. I actually had a very strange day; thoroughly confused, can't work out which day it actually is, trembling all over. I feel like I'm having a panic attack. My blood pressure is low, kidney function is suffering. Boy, what a mess.

Friday 26th
A much better day, still feeling very spaced out but a least able to hold a conversation. The dye they put into you to check your heart arteries screws up your kidneys. Is there nothing they can use to diagnose your ills whithout poisoning some other vital organs?
Anywat, chemo doc comes around today and confirms the cessation of the 5FU (Never liked it anyway) and he will work out a different regime for my chemo next week.
The highlight of my day is my Kathy laying on the bed with me watching some rubbish on the tv, but together, and then out boys turn up from the UK to come and see me. I am so proud of those young men. They brought me get well cards from James and Lucy, our grandchildren. Hand crafted. The best.

Saturday 27th
I am raring to go. I feel great, but they want my kidney numbers looking better before they let me out, probably in the morning. So I'm going to lay around here nagging prople all day until they least me go. Still, what have I got to look forward to? She'll only have me digging the yard if I do get out.

The fart saga

May 16 – Tuesday- First surgery
Well, today didn't go at all according to plan. I arrived at the hospital expecting to have day surgery for fitting feeding and chemo tubes and having another endoscopy for a biopsy. We were all so confident that I had arranged another appointment later on in the day to have my radiation tattoos. I've heard that my mother-in-law has already had hers in England - I think she chose a dragon.
Anyway, two thirds into the surgery prep I'm informed that I'm being admitted as an in-patient and I will be here for one, maybe two, nights. That message of course wasn't passed on to Kath till she got here to collect me at around 11:00am. Poor girl had to sit around for about 4 hours till she could see me as they didn't have a bed for me and they wouldn't let her in to the recovery room. Of course, they finally did let her in.
So I go into surgery expecting to wake up with two tubes emanating from my body and to be hale and hearty and ready to go. I end up with five - the two as planned, plus three others. One in my wrist for drips and drugs, one from my widdler so I can widdle without getting out of bed - a very nice thing to do - and the worst tube known to man, a naso-gastric drain. This thing is truly ghastly, it hurts my throat like hell. I’ve got cuffs on my legs that regularly inflate to keep my blood moving, which I actually find quite soothing. I'm on patient controlled morphine which takes the pain away but the discomfort is still very apparent.

Important note: The next sections contains liberal use of the medical term “fart”. I realize that the use of this medical term is frowned upon by many, but in the interests of full disclosure I have decided to use it.
Later that day
Cool, the nose torture device is gone. I blackmailed them a bit as I needed to take the trial drug and I couldn't do that with the tube in. So they took it out. They hooked me out of bed late last night to make me walk the halls. “Helps with the recovery process, Mr. Tunsley”. Don’t Mr. Tunsley me, young lady, when all you really mean is “Get up and walk, patient 2856493, and be quick about it, I have another 15 patients to torture tonight”.
To say I blackmailed them is a bit of bravado on my part. Going into hospital is to enter another, very controlled but confusing world where the medical system basically takes over all your rights. And I mean all your rights – down to when you pee, when you sleep, what you eat. I’m not eating. Anything. Seems that I’m not able to eat or drink until I've farted. They've got an uncommon interest in my ability to fart. Seems the bowels get very sulky when anyone messes about with them and they go on strike. They then announce the end of their industrial action with a loud fart. This signal is greeted with great excitement by the hospital staff, hopefully resulting in my release.

May 17th – Wednesday
This is a life-simplifying concept. Why did I not consider it before? My life has focused down to a single goal – to fart. It’s better than meditation. “Close your eyes and concentrate on the belly chakra”. Trouble is, there’s just nothing going on. I have doctors of various degrees of importance coming by all day; from the students in their rags and chains, to the chief with his Hugo Armani suit; listening intently to my belly, then shaking their heads before giving me a pitying glance and leaving. I’m still not eating. Actually I’m not hungry but it’s unnatural. This is me and I’m not eating.
I’m walking though. Last night, as I said, they got me up and made me walk the corridors. It hurt, I grumbled, held on tightly to my skinny metal girlfriend (the IV pole) and walked. Today I did it again. Suddenly it’s as if I’m in the local shopping mall. There are people walking all over the place. They're almost all elderly and almost all have enormous bandages on their chests peeking out from their hospital gowns. They’ve nearly all had extensive cardiac surgery. I, with my little tubes, suddenly feel a complete fraud among these people.

May 18th – Thursday
Nothing to report on the fart front. Just nothing. These bowels of mine have decided to take a leaf from their owner’s book and they are in the bowel equivalent of Hawaii having a complete rest. Nothing to do, no curries to digest, no beer to hand off to the kidneys; ah, perfect peace.
It’s peaceful here on the outside too, in a mind-numbing sort of way. Once the news is over around nine, the TV gets shut off and the iPod goes on. I can’t concentrate enough to read so the days go very slowly. I’ve discovered the patient kitchen though. There’s goodies there like ice cream and soda. I stole a couple of Graham crackers and took them back to my room. It felt as if I’d broken out of Colditz, evading all the German guards, and tunneling under the barbed wire. By such small acts, we prove our humanity and our courage. I hope they don’t discover the cracker wrappers during one of the shake-down searches though – they’ll refit the naso-gastric drain as punishment.
I have such good friends. Everyone has said that if there’s anything they can do to help, I should just call. One of them called me unbidden today and offered to come in to hospital and fart for me. Now that’s friendship.
Later that evening
What was that? I heard a noise. Sounded a bit like a Harley Davidson starting up. Wait. There it is again. It’s my bowels. Welcome back, boys, oh it’s so good to see you. Did you have a nice time? The weather here has been dreadful, floods even. You went away at the right time. But now you’re back. Get to work, chaps, and brew me up a few good ones.
They did their job. I won’t go into details as the average lay reader such as yourself just wouldn’t understand, but suffice it to say I went to bed a happy man.

May 19th – Friday
There was joy throughout the cardiac unit at the news of my fart. We had jelly and ballons, streamers, everything. As a reward, they took every tube out of me and released me into Kathy’s arms late this morning. Well, actually, not quite. I first had to go to the radiation planning department and get my own dragon tattoo set up. This happened quite efficiently and then I was off, released into the world, back in control of my own sleep patterns and eating choices.
So, we now look forward to Monday, the first day of chemo and radiation.

Calm before the storm

It's quiet on a wet Saturday morning. I'm up early and introspective. I sit here typing feeling as healthy as I ever have. Truly the calm before the storm. I've sometimes wondered how it would feel to know that I have this thing inside me. Now I know. It feels no different physically, mentally it makes your mind do backflips. I don't feel any fear at all. Kath is scared though. I know I'd be a basket case if our roles were reversed; I am so pleased that if we have to be visited by the beast that it's visited me. Strangely all my senses are heightened. Everything I'm seeing, hearing, smelling, touching, tasting is more than it was before. Rather nice. Kath and I are closer, touching more, talking more. Also rather nice.

I'm reading a lot about this disease over the net. Kath feels I'm reading too much, but it's how I deal with it. I need to know what's in front of me, what I'm fighting. I won't just let it wash over me. Kath isn't reading much at all; she's not ready for it yet. But she will.

There's a lot of people out there fighting this, either as patients or as caregivers. There's a huge range of emotions, from denial to despair. There's a lot of people that have beaten the disease that continue to support those in the fight. The aim of the game is NED - no evidence of disease. That's what you're fighting for, that's what you need to hear your doctors tell you, and it's achievable.

On Tuesday I go in to get two tubes inserted into two brand new orifices in my body. One is for feeding during the radiation when my esophagus is too inflamed to take food; the other is for chemo drugs. Then later the same day, I go for "mapping". They are going to tattoo me as guidance for the radiation. Trouble is, there's quite a lot of me, and much of it wobbles quite freely. I'm going to have to lie very still indeed.

Portuguese Kale Soup?

Nothing so far to report on any effects from the Iressa. I've taken two so far and nothing. Well, actually, last night while it was quiet in bed, I thought that I could hear little tiny screams from all the cancer cells that inhabit the beast as they all begin to realize that they've been discovered and they are now doomed - they're being set up for execution on several fronts. But then again, perhaps I was just hearing things.
I've come to rely on lunchtime soup at work in our cafeteria. Normally very good. I go in there today and - Portuguese Kale Soup. Good grief. Two enormous tubs of it. Weeds in warm water. So I bought and ate two puddings instead. That will teach them a lesson.
In a meeting today at work, I threatened to publish a non-flattering picture of our general manager on the web. When he indicated that it could be a career-limiting move, I said "So what do I care?". Collapse in laughter of everyone present. Black humor is the best humor.

Battle is joined

This afternoon I went back to the hospital to pick up the trial drug.
First of all, I can't tell you how lucky I feel to be being treated at Beth Israel Deaconess hospital in Boston. I'm getting just superb treatment from everyone that I have met. The literature on this disease is very clear - the odds of a positive outcome, particularly from post-op problems - go up substantially at the major hospitals and with surgical team members that perform these operations and treatments regularly. More to come on this subject I'm sure.
So I've started the clinical trial with Iressa - otherwise known as Gefitinib. It's a drug that's shown to be efficatious with some other cancers in some other people and on trial at BID to see if it has an effect on the beast. It costs a fortune. On discount from Canada, a 30 day prescription would set you back $1295. In the US it's tough to get a valid cost but I've seen $3000 mentioned for a months supply.
I got home today at about 4:30 to find Kath playing in the dirt with her beloved plants. We opened the bottle of pills and she popped the first one in my mouth. Battle is truly joined for both of us.

The next email

I was concerned that the first esophagossip that I sent out was a bit over the top and self-serving. People seem to handle diagnoses like this in varying ways – some keeping things very tight to their chest and some just wanting to tell everyone so that it doesn’t “leak out” and you suddenly find people not meeting your eyes any more but not sure if they are supposed to know. So, now I know what type I am, and so do you. Anyway, the response to the email has been overwhelmingly positive, so I’ll carry on for a bit anyway. I guess later on when my news comprises simply more gory details of emanations of various bodily fluids I’ll tone it down a bit.

They say every cloud has a silver lining, and I’ve found mine. After 37 years of dedicated service trying to control my caloric intake, generally successful despite what my build may suggest, Kathy is now trying to fatten me up! Yippeee! She has bought me high protein smoothies and shakes, nodded happily when I hold up the Starbucks coffee ice-cream with that “Can I, please” look of a four-year-old in my eyes, and she is becoming a blending guru. As you may surmise from the preceding list, I’m basically off chunky food now as the swallowing difficulties have increased. I can still eat reasonably normally as long as I choose my food carefully and chew it for ages. Hopefully the chemo/radiation will shrink the tumor – now known as “the beast” – but it will make it painful to eat and probably put me off food for ever anyway. That would be a first for me.

Kath and I are in New York for a long weekend; actually not so long now as we had planned as I have to go to the hospital on Monday to begin treatment. We had this weekend planned for months, mainly to see Tosca at the Metropolitan Opera. It was magnificent. Today (Sunday) we visited the NY Botanical Gardens in the Bronx which was also fabulous, even for me who thinks all green things are hostas and all flowers are hollyhocks. We return home tonight, then tomorrow we start to battle the beast.

So briefly, as I said in the previous email, I’m going to have chemo and radiation concurrently over about a six week period. Prior to that, I will be taking part in a clinical trial for a drug that has the intent of pre-treating the beast to become more responsive to both the chemo and the radiation. It’s known to be effective for other types of cancer, and they consider it may be effective for mine, but they don’t know yet. Hence the rush back on Monday to begin treatment. The other part of the rush is an attempt to have me completed for treatment by the time Kevin’s wedding occurs in early July. The medical staff is rearranging appointments for me and other patients (sorry guys) to get the treatment completed by then. However, I’m under no illusions about how I may feel and look at the end of this regime though so let’s just hope I can get there. I’m going to have two tubes installed – one for chemo and one for feeding – into holes in my body that don’t currently exist. So my feeding in the future is likely to comprise pouring sustenance into a funnel and letting it go straight to my stomach. Trouble is, I quite enjoy the chewing and swallowing bit. Still, as my loving wife says, it should save on washing up!

Cheers,
Roger (The Beastmaster)

The original email

As most of you have heard by now, I have recently (Tuesday) been diagnosed with esophageal cancer. Many of you have sent me your good wishes and you all have my sincerest thanks for that. Also, most of you have asked in a moment of weakness and pure emotion to be kept up-to-date with my progress, so I’m going to send occasional email updates to you all. I hope you won’t be excruciatingly bored by these; I’ll try my best to keep them interesting but we are talking hospitals and bodily functions here! I realize this email won’t be everybody’s cup of tea, so please let me know if you’d rather not be included, or just hit the Delete key when they arrive.

The problem, as it shall henceforth be known, showed up initially as a sudden difficulty in swallowing food. At first I put this down to the fact that I tend more towards inhaling food rather than chewing it 32 times before swallowing, as my dear old mum used to tirelessly exhort; alas to no avail. However, as it began to happen more frequently, I went to the doctor. She sent me first of all to get a “barium swallow”, which comprises drinking about a quart of thinly mixed spackle/polyfilla (US/UK conversion technique here) and having an x-ray while doing so. The radiologist told me rather dismissively that he didn’t really see anything and to chew my food more. However, on closer and later examination, allied with my going back to my doctor and grumbling that the problem was still apparent, I gained an appointment for an endoscopy (wiggly tube that can see into areas where the sun doesn’t shine). The endoscopy was carried out last Tuesday, the diagnosis made on the spot without waiting for the biopsy results, and I was suddenly on the cancer train, hurtling along seemingly out of control.

The problem is a 3 cm tumor in the lower esophagus, just before it joins the stomach. It’s seemingly a pretty nasty little bugger. If you go and Google it (from the verb “to Google”) and then uncritically read everything you find, it makes you want to open a vein on the spot. However, there are some great sites among the chaff and Kath and I began a quick study. Some of you will know that by a horrible coincidence, Kath’s mum is currently receiving treatment for the same cancer. Unbelievable.

So, I’m now on the train which is barreling along, but is actually very well directed, as trains on rails often seem to be. The process by which this disease is evaluated and the relevant treatment chosen is very proscribed. Not surprising really I suppose but when you don’t normally dabble in the medical black arts and you are suddenly forced to by circumstance, the efficiency of the process takes your breath away. So I left you all at Tuesday with a visual endoscopy. Move along just two days to Thursday and I’m having a consultation at Beth Israel with a guy with the biggest job title you’ve ever seen – it includes the words thoracic, oncologist, surgeon, and chief. Chief eh? I automatically trust him. So he lays out all the options on the table for treatment, prognosis, possible problems, possible clinical trials, forbids me from Googling – some hope! Friday (yesterday) I had an ultrasound endoscopy and a PET/CT scan (look it up), both of which were designed to evaluate the spread of the tumor. The result is generally good news. Although the tumor is clinically a stage 3, it is seen in only one lymph node and has not spread to any other organs. So I believe I will be undergoing a course of chemo and radiation therapy (not sure why they would call that therapy really) followed by surgery to cut the blighter out. There’s also a possibility of taking part in a clinical trial for a cancer drug, but we know little about that yet.

The support of family, friends, acquaintances, and colleagues is amazingly helpful and Kath and I are truly grateful to you all. Thank you so much.

Roger