Chemo is done!

Whoo-hoo. I went in for the final chemo session today. The ologist decided to abbreviate the last session based on the fact that one of the side effects of the CPT11 drug had begun to kick in and he was concerned that it may get far worse with a full third session. I won’t go into the details too far but I’ll quote him – “You won’t want to spend the day of your son’s wedding sitting on the can!” So my last chemo was just a full infusion of the cisplatin drug without the CPT11 frosting on top.

I certainly won’t miss the new drug as it really messed around inside my head – a tenuous place at the best of times. After last Tuesday’s chemo round, I suffered most of the week from what is known as “chemo-head”, only really coming out of it on Monday afternoon. Basically I was in a fog although my thoughts were coming thick and fast. Trouble is, I couldn’t process them properly. A thought would come along, clear and lucid, but then be instantly replaced by another before I could do anything with it. “What was that?” was the main repeating thought of the week. I also had a giant case of the munchies all week – in fact I put on a few pounds. Hhmm. Can’t concentrate. Giant munchie frenzy. Surely this stuff can’t be related to… No, of course not. Whatever am I thinking?

The other major effect that I’ve been suffering is tinnitus or noise in my head that’s not really there but goes on continuously. Now I’m sure everyone’s seen the Lord of the Rings” movies. You remember when the great orc army goes on the march? (The orcs are those ugly unwashed things with British accents and Austin Powers teeth.) The orcs are chanting and belching, banging their swords on their shields, and their footsteps crash in lock-step over the land. From the distant castle the noise comes on the wind, faintly at first as quiet conversation falters and fails, then building, slowly and ominously. As the army gets nearer and finally appears over yonder blasted hill, the guttural sounds swell to a fearsome crescendo that chills the mind and dulls the senses.

Well, my noise is nothing like that at all; good grief, that would be really scary. My noise is hard to describe, but is high pitched and continuous. Consider countless microbe-sized three year old girls, all playing together at once in between my ears. That’s my noise. It’s relatively background so doesn’t interfere with speech or hearing too much, but it’s there all the time in the quiet moments. So I hope it goes away. Actually, my brother Robin has suffered from tinnitus since the early 1970s and in 1981 he went barking mad from it, so I really do hope it goes away or I’ll need to be locked up as well.

Sound a bit whiney, don’t I? Well, as many of you will attest, I’m still getting off very lightly compared to most. I plucked up a great deal of financial courage and had a haircut on Saturday, hang the expense. Yes, my hair, or what there was of it when this whole thing began, is still in place. I do make sure not to make sudden movements with my head, but so far so good. My weight is still pretty much what it was when I started as well. I’m back to eating most everything, albeit with some discomfort from the radiation burning inside. I cannot praise enough the attitude of all the ologists, in particular the chemo dude, for keeping our deep desire to make it to Kevin’s wedding at the forefront of my treatment. Every choice that’s been made has had two main components – is it going to kill the beast and is it going to leave me in a fit state for travel to the wedding, eating steak, drinking English ale, and embarrassing my son and his new bride.

It’s looking really very good at the moment.

Sergeant-Major Ambien

It's Wednesday June 21st at 2:15 a.m. and you know what that means. Deep introspection. Or as deep as my shallow mind can go.

Yesterday I had my second round of plan B chemo which, as the interested or alert among you will remember involves copious infusion of anti-nausea drugs. Now these drugs are better than any Starbucks "triple-shot mocha frappucino, hold the cream but double-blend please" drink for wiring the mind. So after treatment, I'm awake with a huge vengeance and with myriads of random and tangled thoughts revolving around in my head; thoughts of western, eastern, and new-age medicine, thoughts of mortality, lifestyle, possibilities, probabilities, and so on. But, I'm in week 5 now, so I know what to do. Two Ambien sleeping pills. I've seen the adverts. A couple of Ambien and I will be visited by several blue butterflys that will fly in my bedroom window and proceed to caress my forehead until I fall asleep alongside my new golden retriever puppy. Then I will awake and go for a run in the park with my new pup, picking up pup poop as we go (the ad didn't show that bit).

The Ambien doesn't work, at least not to soothe me to sleep. Partly because our bedroom window is shut tight against the heat and humidity outside so the butterflys can't get in and we only have an old cranky cat. But it is having another effect - it's a rather efficient thought-marshaller. It's acting a bit like a sergeant-major and whipping those thoughts into line.

"Hey, you. You, laddy, the acupuncture thought, what are you doing in there with the radiation thoughts? Come over here to Chinese medicine immediately. Drop and give me twenty and don't let me catch you in there again."

So here I am, awake in the middle of the night, with all these wonderful compartmented thoughts on my/our lives so far, my/our lives in the future, treatments being undertaken, treatments being recommended by both the medical and the lay communities, the increased imminence of morbidity and death, either from the cancer itself or from the treatment and surgery to defeat it.

So what do I do with these here thoughts? Let's examine a tough one in more detail, the death and dying group. Let me start by saying that I in no way have a death wish or continuous morbid thoughts about death. The whole purpose of what I am undertaking here is to cure the beast and continue living the life that I love. But I'm ready to opinionate a little on the other side of that coin.

We all know at some intellectual level, that we will die some day. Most of us, I guess, keep that nasty little one tucked away in some hidden recess of the mind and never offer it any real exercise or chance to debate with its peers. In offering my own thoughts here, I need to set a background to them. I am an atheist. I cannot subscribe to the idea of some supreme being, sitting there monitoring the world, visiting death and destruction on people, and then in the midst of all that, offering a miracle rescue to an individual or group who then thanks the being for choosing them for saviour out of the multitude. I cannot subscribe to a belief that has as the answer to its most unanswerable questions "God works in mysterious ways". I'm honestly not trying to preach atheism; that to me is as bad as preaching any other organized religion. Sprituality is personal and whatever the individual deems it to be. Humans like to share their thoughts and dreams with one another, including their spiritual thoughts. As soon as we begin to organize around any kind of spiritual like-mindedness, we develop a religion. Or a gang. And our gang is always better than your gang.

Many may think that there's not much substance there to support me when I am under serious duress. But my spirituality revolves around the life I have now and have lived, not what I think may be waiting for me afterwards. I believe that death is the end of life entirely; for me there is no afterlife or consciousness. I'm not scared of death though. If I were to die now, I would die a happy man. All that life has given me is good - a great marriage, children, grandchildren, all that you can do to pass along your legacy is pass along good genes and good memories, and together Kath and I have done that. So there are my spiritual underpinnings.

I was brought up a Christian and bringing up a child's mind to accept any kind of religion sets very deep roots and leaves a lingering guilt about turning away from those roots in later life. So this begs the question - What if, after all this, I'm wrong? Won't it be a shock to die and find myself fully awake and in the presence of sergeant-major Ambien?

"You there. You're one of the unbelievers, aren't you? Took the wrong bet there laddy. Join this enormous gang over here and we'll march you off to your rightful area to live for all eternity. You didn't do bad in the commandments - well you did covet a bit but no more than normal - but you failed on the big one - there is only one true God. Sorry, that's an automatic fail. Join this group of rapists and murderers over here please. You lot get the gray stormy clouds and the broken harps."

Finally, I have no wish to denigrate the beliefs or faith of anyone else, reading this or not. These are just my thoughts that sustain me. And for those who have offered me prayers, thank you and I accept them whole-heartedly. They are positive thoughts and I will take all that I'm offered.

Tube Heaven

  

Infusion Confusion

I’m now well over half way through the initial treatment. 18 out of 28 radiation zaps so far, and a full dose of plan B chemotherapy.
I seem to be tolerating everything pretty well so far although this week has been a bit more tiring than most. The swallowing was getting better at first but it does now begin to feel a little more uncomfortable again. That hasn’t stopped me eating yet though – we had some friends round for a barbeque yesterday and I did it some carefully chosen damage. One of the nurses this week exclaimed her surprise at my lack of weight loss. She doesn’t know my strength of character when it comes to food though.

I’ve said very little regarding the chemo treatments so far, other than commenting on the bad reaction to chemo plan A. So, what’s happened since? The ologist was reasonably relaxed about the plan A failure, even though it broke the protocol of the trial drug and so stopped everything in its tracks other than the radiation. Once everything in my body stabilized (I think!) he came up with plan B. This is for three further weekly infusions of chemo drugs. Each infusion is at a single sitting, rather than wearing an infusion pump as I was with the 5FU. I’m back on the cisplatin as I was for the first go-round, coupled with a new brand of poison called CPT 11. Can’t have quite so much fun with those initials as with 5FU so hopefully that’s an indicator that this might be more benign. So the poisoning has begun again with the first of the three infusions last Tuesday. The beast is under attack from all fronts.

The nurses do their very best to make what is a pretty boring and intimidating experience bearable. The chemo room is light and open, with lots of comfortable reclining chairs set around the room for the victims. The chairs are plastic and at first glance they look quite unpleasant. Couldn’t they have nice soft material? Then the nurse goes over some of the side effects that “may” occur during the treatment, one of which is quite explosive diarrhea. Aha, I understand now. Hope nobody else had that in my seat.

The area has its own kitchen and there are volunteers there daily to look after the patients. These are invariably older and lovely ladies that are all cancer survivors. They bring around lunch bags, coffees and drinks, ice creams, and generally make everyone’s life as pleasant as possible. They describe themselves by the affected body part - "I'm a lung, I'm a colon". One of them says that they’re trying to get enough volunteer survivors together to make a complete body.

Not one of them says “I’m a hero”. But they all are.

There are a lot of people in treatment. There’s at least 22 chairs ranged around the room, each with a patient and more come and go while I sit there. Some of the patients in the room once more make me feel a fraud. Here I am doing quite well, thank you very much, but some of these people are really in a distressed state – major hair loss, walking with great difficulty. Yet almost all of them are upbeat. No-one seems miserable or defeated. But it’s not just in this room - we’re everywhere. It’s amazing to me, since this whole thing began, how many people have told me that they are a cancer sufferer or cancer survivor, and of course I know some people that it has beaten.

But let’s get back to being shallow and self-obsessed. My biggest problem now is – shall I get a haircut? I keep tugging at it. They used to be quite tentative tugs, as if the whole thing would shear off like a toupee. But they’re now quite full-blooded confident tugs and nothing moves. The hair is growing, and I need a cut. I just know that I’ll go and spend $20 on a cut and then leave the rest on the pillow the very next day. Oh, you people have no idea of the misery!

Clean shaven - by choice

  

Beam me up, Scotty

I’ve now completed week three of my radiation treatment regime and I’m still feeling fine in general. Tired during the day still but so far that’s the only symptom. I’m working most days. I need 28 separate radiation sessions and so far I’ve had 13. I missed one on Memorial day – I guess the radiation doesn’t work on holidays – and one of the sessions this week was cancelled due to a problem with the software. That certainly made me stop and think. One of my jobs relates to software quality and one of the mantras in this field is that there is no such thing as bug-free software. Hmm. I’ve seen enough software bugs that appear only in the most complex circumstances to know that’s true. “Well, Mr. Tunsley, we found that when the headrest is in slot P, the temperature in the room is between 68 and 71 degrees, the weight of the patient exceeds 203 pounds, the machine angle is 42 degrees, the Red Sox lose against the Yankees, and someone is playing online poker on the other computer, the machine actually delivers ten times the dose that we asked for. Wow, it really made a hole right through your body this time, didn’t it? Does it hurt?”

That’s not really fair. I have nothing but full faith in the radiological oncology (there’s two of those ology thingies again in one place, wow) department. They, as all other people I’ve dealt with at Beth Israel Deaconess Hospital (to use its full title) are very professional and caring. Well, until yesterday that is. They’ve discovered my blog and all they wanted to do yesterday was talk about the entries instead of me. “I think the blog’s really good, I especially liked the bit about the heart attack. Scary, huh? I bet you thought your time had come. (Chuckle). Take a deep breath for me. Any internal burning sensations? Now what exactly is Portuguese Kale soup?”

I think that secretly they’re a bit miffed that I haven’t discussed the ROD more up to now. So I’ll try to describe the process. I drive into Boston, usually from work. It’s a midday appointment so the traffic isn’t too bad but it still takes anywhere from 35 to 45 minutes. I go into the department and check in with a blue card on a bar code reader. That alerts the techs to stop playing solitaire and set the star trek machine up for me.

I get changed into a hospital robe. They are all like star trek uniforms – not designed for the overweight among us. I did try one of the robes on the shelf marked LARGE ROBES but they would have gone around Pavarotti twice so I gave up on those too. A small aside here; the hospital gowns that are more normally worn, the ones designed to show your bum to the world at large, are known as Johnnies in the US. Collapse in laughter of all UK readers. For my US readers, you should know that in the UK, a Johnny is the slang term for a condom. The first time I went to the doctor in the States I was instructed by the nurse to take my clothes off and put a Johnny on. I had various visions of the treatments I was about to receive. I was a very confused soul.

I am then led into the room containing the death ray machine. One of the ologists (the pretty one) would like to refer to it as the healing rays, but she can’t fool me. All I know is, just before they start trying to beam me up, all the techs run out of the room. Now if these rays are so good at healing, why would they do that? To me, that’s pretty suspicious.

They lay me on a table on a sheet and tell me to make like a log. They move the table to set me up closer to the machine. It’s got lots of lights and buttons with unintelligible text. It’s probably manufactured by Klingons. They tug the sheet around to move me around bodily and line up cross-hairs with the tattooed dots on my body. Then, like I said, they all flee. There’s a brief ‘beam me up, Scotty” type noise, about nine seconds worth. Then the ray gun rotates around me to get me from the back as well. Another beam-up noise. And that’s it.

Forty-five minutes drive in, five minutes treatment, then forty-five minutes back. Well, actually I often take a bit of extra time and have lunch while I’m there. I get free parking while I’m in treatment so I might as well make the most of it.

Needles, Hammers, and Androgynes

This is a long post, so settle down at your comfiest computer to read it. I’m finding out that cancer takes you down new and strange pathways. One of the newest experiences I’ve had recently is acupuncture.

Now before you all burst out laughing, thinking that I’ve become all new age and any day now I’ll have my hair – all three strands of it – in a pony-tail, please note that I’m doing this under a bit of duress. Kath wants me to try anything that will get rid of the beast – shark cartilage, essence of bull testicle, anything. One thing that she has become convinced about recently is the benefits of acupuncture. A friend of ours had a very severe case of colon cancer and was undergoing both western medicine and acupuncture. He was cured, one way or another, and his wife was convinced that the acupuncture had a lot to do with it. She convinced Kath in turn, and Kath persuaded me to go to the same guy.

So, ever willing to do my bride’s bidding, off I went into Chinatown in Boston. The man was very accommodating, but also very self-promoting, saying he could cure cancer and all other ills. I’m not an absolute skeptic regarding acupuncture, I have read enough articles to be cautiously optimistic that it is at least beneficial in various ways, but this “I can cure you” attitude annoyed me from the start. Still, open minded as I am, off I went into the treatment room. He placed several needles in my legs, back and head, and left me to relax for 30 minutes. Then he came back, removed the needles, and proceeded to try to kill me with his bare hands. This was disguised as a massage, but he was actually trying to force his hands into my body. I believe he wanted to reach in and rip the tumor manually from my body. I was yelling out in pain, but he just muttered about the good he was doing me. I was just about to grasp him warmly by the tender parts when he stopped. Phew. I thanked him copiously for his attention and left. I didn’t feel any different. Yes I did, I felt relieved it was over.

OK, I confess, I’m a plonker. Just call me Rodney. I went back for another go a week later. Call me any names you like, I’ve called myself the same already. This is now the really interesting bit of the story. I turned up very early for the appointment and so had to wait some time for my punishment. There were several staff members there and two other customers waiting with me, an older lady and gentleman. After a while, another western lady came in and sat in a customer chair. She seemed to know the staff members quite well and I assumed she was a long term customer.
Anyway, suddenly, the older lady customer asked the owner if he could do anything about her husband’s knees, which were very painful and swollen. Without a word, he took a small silver hammer down from a hook, and picked up a small 8 inch model of a naked man covered in acupuncture dots but with no discernable genitals. (This is the USA remember – we don’t allow genitals. All the war and disemboweling you can handle, but none of that other dirty stuff!)

I digress. He hands the hammer and the model androgyne to the new customer who proceeds to start tapping the model with the hammer. She taps it up and down the spine, then on each knee in turn. I was just dumbfounded. I looked around at everyone else and they were all completely relaxed and chatting away about various things – the owner kept saying every three minutes or so that he had a customer with esophageal, lung, liver, and kidney tumors and he had cured him. The tapping continued for 15 minutes before I burst. “What are you doing?” I cried. I believe I really did cry out I was so pent up. She looked at me as if I was a child. “I’m helping the man’s knees”.
“How?”
“I’m sending him healing energy”.
“How do you know he’s getting it? You might miss and the energy gets me instead or goes whizzing out of the window and heals the knees of some poor unsuspecting passer-by”.
“Because I’m thinking about him”.
She then asked the guy how his knees felt. “They feel funny” he said, “all tingly”. Hmm.

At this point, I was led into the treatment room. Once more with the “I can cure anything” stories, then the needles. I’ll cut a long story short. This time, as he was unable to penetrate my skin on the previous try, he sent an evil henchman to do the massage. An Egyptian guy, who was twice as strong and just as determined to inflict pain. When he squeezed my neck, I felt he was actually trying to pop my head off my shoulders.

I’m not going back. However, I did hear about another acupuncturist more locally and went to see her last evening. She's charming, she's calming, she makes no claims apart from being able to help the body’s healing processes, and she’s incredibly attractive. Now we’re talking. This is the acupuncture for me. I’m not sure Kath’s so happy with the new turn of events though.

Being a blogologist

Well, week 2 of radiation treatment is over and I'm still feeling remarkably good. I'm a bit more fatigued and needing to take little naps here and there but that's perhaps cause I'm getting old anyway! No, my sleep patterns are definitely changed and I'm waking up really early most days - sleeping fine but waking early. Other than that:
I've not lost any hair - yet
I've not lost any weight - yet
I've not lost my appetite - yet
I have shaved off my beard, much to the delight of my mother-in-law who has always hated it, but much to the chagrin of my wife. "Grow it back, I can see too many chins!"
My mother-in-law, as some will remember, also has esophageal cancer. She is receiving palliative care only and is a week ahead of me in the radiation treatment schedule. She grumbles about being really tired and needing to sleep a lot, but as her life has always been really busy, working hard and looking after other people all the time, she is still probably more active than me if the truth be known. She is an incredibly strong lady and if anyone can get past this, she can.
A thought occurred to me this week, that I'm suddenly collecting "ologists". It quite fascinates most English people that Americans all seem to have several "ologists". "My cardiologist is all heart", "I just adore my gynecologist", "I broke down in front of my psychologist". Most Brits just seem to go "to the doctor". Well, now I'm an American, I'm fully in the "ologist" club. I have collected several of them that I now consider my own - a urologist, a proctologist (yuk), a radiation oncologist, a medical oncologist, a surgical oncologist, and I need to make an appointment soon to see a cardiologist. It's becoming a bit of a game now, like baseball card collecting. There are several more to bag, including my favorite, an otorhinolaryngologist. I probably won't get one of those 'cause I can't spell it. I refuse to be an apologist regarding this change of attitude. Only an ideologist would hold dear to the old ways, and anyway all these names are quite fascinating to the budding lexicologist. Just look up enologist. I want to be one of those.

Getting better