Cisplatin and tinnitus

One thing that I haven't mentioned over the past few days that should be noted is the effect of Cisplatin (the chemo therapy drug) on my ears. Tinnitus. Since last Friday (yes, it took two days to manifest itself) I feel like its always the day after a big rock concert. My ears are lightly full of white noise, punctuated by high pitch whines. Physical pressure changes from the weather, wandering from room to room, just a subtle change in altitude up and down a hill can make a difference as to what I hear and experience. Certain metallic sounds are louder, shriller and other, usually confronting sounds, can be just on the edge of annoyance. The seat belt warning bell is loud. The fan on the furnace in the middle of the night is deafening. The small humidifier we're trying to use to hydrate my sinuses is a jet engine in the middle of the night. And yet the cat's purr is a barely heard whisper...

Another day's delay...

I guess that even the cancer centres have to make arrangements for maintenance issues... The tomograph machine that is being used to provide my radiation therapy is being shut down for a day's worth of maintenance tomorrow. Sure, I can always use the extra day for my skin to recover from the low level burns, but it does add another day to my schedule.

Damn.

"You'll always have more hair than I..."

...words from the very balding Dr. Jha, the radiation oncologist in charge of my radiation therapy as he listened, patiently, to my litany of complaints late this morning. I was complaining about my beard having been burned out, and off, the thinning hair at the back of my head down to the base of my neck. We get time with him once a week (unless we need more) to discuss the effects of the radiation. Today I did throw in some additional stuff about the fatigue that seems to be a direct result of last week's chemo therapy session. We also managed to slide into a discussion about the grabbing feeling at the juncture between esophagus/diaphragm/stomach. He wrote me a prescription to try: Pantoloc. This evening the 'pain' is under control, but every once in a while we still have a bit of the spasm. I'm hoping that this will go away soon.

I managed to get away with only losing 3 lbs this weekend (since the chemo) which is a big thing given how very little I managed to eat. The nurse that does the triage for the weekly sessions commented that the 3 lbs does not put me in the danger zone for a needed J or G tube insertion. And Dr. Jha mentioned nothing about it, so I assume that as long as I keep the weight relatively balanced, I'm in okay shape going forward.

We had a quick meeting with the Cross's physio person, a nice woman named Rita. She and I talked about the energy issues and suggested that, as we've already acknowledged, expending energy grows energy. But it is so tough! All I want to do is sit, lie down, take the weight off...

Damn, but I'm getting to be a pathetic old man. My father has more get up and go than I do right now!

ONLY 11 (eleven) MORE RADIATION SESSIONS TO GO!
ONLY 1 (one) MORE CHEMO TREATMENTS TO GO!

White Noise...

Sometimes a bit of white noise in the background is more comforting than silence. I haven't written in a week, through a week that had promised all sorts of challenge. I'm sure that some of you who check in regularly may be concerned. Don't be. All things are moving forward nicely... little to no problems. The major challenge is that a change to the anti-nausea drugs is making me very lethargic... down right sleepy, really. I am not sick. I am not spewing everywhere and everything as I did last time. We even seemed to have gotten the hiccups under control fairly early on, with the odd, gut-wrenching spasm at the esophagus/diaphragm barrier. Makes me wonder if I'm heading for a hiatus hernia...

So, I'm here, I'm good, and I'm tired.

I'll try to write detail tomorrow as the last of the anti-nausea drugs work their way through my system.

Half Way Through the Radiation...

Today marked the 16th radiation treatment, which I'm calling half-way. Whoo-hooo!

Ya, I know... there are 31 treatments scheduled, but, really, how you do count half a treatment? Just go with it, okay?

I am sporting the 'sunburn' effect of the radiation in good ol' farmer fashion. The burn starts high on my cheeks and tracks down to my neck and kinda tapers off below the shirt neckline. Gee, what an interesting way to get the burn without 8 hours on a tractor...

My hair definitely is beginning to go... the drain in the shower is testament to the effects of the therapies. And, even more so than the other day, I can visibly see my beard thinning. Damn. I really like my beard. I hope it grows back. Damn. Gail asked me if I wanted to get my head shaved. I've said no. I just need a really short cut to minimize the look... and I'm hoping that the folic acid supplements will slow the loss.

We're leading into the Family Day weekend, so I get three full days without any sort of therapy to recover a bit. Then on Wednesday, the next round of chemo is due... today we picked up the surgical masks from the pharmacy to make any forays into the great wide world a bit safer for me during the second chemo course. With the weight loss, we are expecting the immune system to get hit a bit harder, so we will be taking precautions sooner than later this time. If only it was that easy to get my caloric intake up...

"Surgery is easy. The rest is hard."

I guess that I'm kinda falling behind on the reporting, here... my brother dropped by after work with a contribution for the 'fridge (beef stroganoff... I'm looking forward to that!) and mentioned that he'd had a look at the blog. He seems to be in agreement with my assessment about the contribution to fatigue that my lack of exercise may be making. Now that we're not virtual prisoners because of the extreme cold, I need to start to address that. Hell, we've got access to this multi-million dollar gym and pool, I'm paying the monthly fees, and I never go. As we talked, I realized how much I haven't posted about what we've done this week, already, so its time for an update.

On Monday of this week, after the radiation therapy session, we had a review session with Dr. Jha, the radiologist in charge of my therapy, and most of the team. Nice guy, very open, helpful. He had a quick look around in my throat, and seems quite content with the progress. His intern, a lovely young woman named Dr. Putrure (sp?) noted that the forearm flap in the back of my throat is growing a bit of hair. This will go away with as the radiation treatments continue. Dr. Putrure, although quite nice, does need to relax a bit. She seems to be of the 'don't-make-friends-with-the-patients' school.

Dr. Jha has issued the same warning that Dr. Koski did; control the weight loss or expect a radical solution. He was referring to the feeding tube inserted into the abdomin. Oh, yea... what a great idea. Yuck.

Anyway, Dr. Jha has prescribed a skin cream (hydrozone), a custom mixed mouthwash (Akabutu's Mouthwash, developed by a doctor at the Cross Cancer Institute), and a lidocaine-based solution to numb my throat if things get so bad I can't swallow (Xylocaine Viscous). When I presented the prescription to the pharmacist, one that I don't normally deal with at London Drugs in St. Albert, she was visibly startled. Then she admited that it was the colour of the paper that the prescription was written on. Apparently the Cross Cancer Institute is the only local user of yellow for prescriptions. She hates having to deal with them because she understands the implication. Very sensitive for a pharmacist, I thought.

I've tried the mouthwash, and its not bad... it has a bit of lidocaine in it, and stuff to soothe the other mouth sores that may arise. It also breaks downs the thick saliva... (NOTE: there is a rough outline of the recipe in more recent posts; keep looking!)

As part of my coping with all of this, after my first radiation treatment, I have not shaved, other than to neaten up my returning beard. The radiation team makes jokes about it, wondering how long it will be before the mask gets too tight. I don't think that's going to be a problem... this afternoon as I was rubbing the skin cream into my beard, hairs starting coming away. Damn. It looks like I'm going to loose most of the beard on my cheeks...

Tuesday afternoon we met with Dr. D. Williams, the surgeon who has been shepharding me through the surgical side of this. He was quite happy with the results so far. When we mentioned the hair growth at the back of the throat, he took a quick look (my gag reflex is way too sensitive for anything more than a quick anything in my throat) and remarked that it actually looked like it was braided... this guy is good, and funny. Nice attributes for a surgeon.

We talked through all the bits and pieces of what I'm feeling and going through, and he reminded me that he had said, months ago: "Surgery is easy. The rest is hard."

He also commented that the feeding tube is not nearly as bad as the alternative. He as much as advised me to start trying to get my head around the concept... or figure out another way to increase my caloric intake, a lot, in spite of the problems I'm having with taste, and the problems I will be having with swallowing. There is a kindness and gentleness in this man that makes you want to listen to him...

Dr. Williams has prepared a letter of extension for my disability to pass onto my employers. I think that there's a typo in it. He is suggesting that I may need to the end of June for convalescence. I think he meant the end of May, just to give me the six months that I argued with him about the first time he wrote the letter.

When we plot the radiation, ending March 11, 2008, and the chemo (February 20, 2008 plus 21 days to the final treatment which would also be March 11, 2008) and add in recovery time from both, its unlikely that I will be able to spend any quality time at the office before the first of April.

I am now playing telephone tag with our HR department to discuss how we want to play this out...

Physio was on Monday and Wednesday (today). Because next Monday is a holiday here in Alberta, I won't be doing either radiation or physio... and I canceled the following Wednesday physio because its chemo day. We do remain concerned about the range of motion in my shoulder, and I have resolved to work seriously at it over the next few days. My wrist is in good shape. Small victiories, quick wins. Yay!

By the way, I picked up a new flavour of Ensure: cafe latte. My gawd! Its cloying enough to break through my taste barriers. I hope that it isn't this bad for real...

Update...

We're now eleven (11) days into radiation therapy for my oropharyngeal carcinoma. Well, that should probably read as 'eleven treatments'. We started the treatments on January 25, 2008 and yesterday, Friday, February 8, 2008 was the eleventh treatment. I do get weekends and holidays off... The final radiation treatment day is scheduled for March 11, 2008, which will give us a total of 31 sessions.

I'm finding that the radiation is, in concert with the ongoing effects of the chemo, tiring me out far more than I expected. After having done some research on the topic, I believe that I have been handling it a bit poorly; I should be going to the gym to use the treadmill each day. Exercise generates energy. Inertia generates ennui. As it is, I come home from the early morning treatment, have a light (or non-existent) snack, lounge on the couch and find myself waking up two and three hours later. This is not good. This is really not so good when I still find the need to take a late afternoon nap that will also last two hours. I suspect that it is affecting my overnight sleep.

Now, for those of you who are shaking their heads about the comment about using a gym for something as simple as walking to get some exercise, please remember that I am in Northern Alberta where the high temperature today was -28c. Do you wanna join me for a walk in that temperature, or would you prefer to meet me at the gym?

I did sneak out earlier this week to have coffee with a friend and wander around Chapters for a couple of hours. It was a wonderful respite with people and books and scents and sounds and sights... but it did take its toll. I came home and immediately crashed for about three hours.

With the chemo therapy, we are now 16 days since the first course of poisons were injected into my system. In theory, we are coming out the other side of the immune system depressive effects and start on the upswing again. (I really should NOT have indulged in my trip to Chapters earlier this week! I could have picked up something really nasty... but it was fun.) February 20, 2008 is when we're scheduled to for the next course... gee, I'm soooo looking forward to it... please notice the sarcasm...

My weight loss continues to be a concern. So far I have lost 28 lbs. since the we started this... I weighed 208 lbs. the day before surgery. I now weigh I80 lbs. And I don't trust our scales... when I stepped on them this morning, the reading was 178.8 lbs., which then rebounded to 180. Food doesn't have much appeal to me, which makes it really tough to force myself through what used to be favourites: chicken stew, chili con carne, meatloaf. Even ice cream holds no real promise of flavour. The various fruit juices I am using to remain well hydrated all taste the same. This morning Gail tried to blend together what should have been a fabulous shake, but it, too, was lacking in flavour 'punch'. I just can't seem to taste the sweetness. Damn.

My shoulder is only just 'okay' at this point and will need some fairly serious work at some point soon, largely because of my inactivity. I have been trying to paint, but the strain on my shoulder does make it somewhat tiring, not to mention that my painting is generally crap anyway, which is another tiring point. I need to take a few more courses. Time on the computer, writing, hasn't been what it has been. Its not just the shoulder... the tiredness actually seems to sap my creativity when I get to the computer. Lying still, hovering between wakefulness and sleep, I seem to be able to think of some pretty amazing things to write, but the moment I get up and head for the computer, they're gone... I'm trying to read, both fiction and ITIL, job related stuff. Even the fiction doesn't hold my interest for long. I found this really fun book titled "Gods Behaving Badly", but even that doesn't hold my interest for any length of time. Damn.

My jaw is still tight, my tongue tires easily. But there seems to be some merit in the speech pathologist's plan to address the deficiencies after the radiation. Apparently I have yet to encounter the potential mouth sores, the sore throat, the difficulty swallowing. It doesn't make a lot of sense to spend too much time on speech when it will degrade anyway. We might as well wait for the healing after radiation to begin...

Cycles and rhythms...

We should probably all stop and reflect, for a moment, on the rhythms that make up our lives, that guide and direct our choices and interactions, paying special attention to the outside forces that push and pull us in different directions, often into corners for us to fight our way out of, or that leave us stranded in the middle of wide open expanses, desperate for some sort of signpost to point us forward...

Today is Day Eight of the chemo/radiation cycle. And this morning, I actually feel pretty good. Slightly annoyed by the fact that butter slathered, maple syrup dripping buckwheat wafer tasted bitter, but bouyed by the other fact that I am HUNGRY! Woo Hoo!

Yesterday was the day of change. I awoke with a calm stomach. I travelled to radiation with hardly a belch... I arrived home later in the morning and ordered Wendy's Chili and a large coke for lunch (now that was a conversation with Gail that you're better off not having been part of!) and actually ate and drank it all with no adverse reactions...

During the travel time Thursday and Friday, my escort had been JoAnna D. JoAnna lost her Robert to liver cancer a little over a year ago, after a pretty messy two years. Our time together has been spent talking about silliness mixed with the realities of the disease treatment. One of the things that she told me was that her family had identified a rhythm to what Robert was going through. They were able to say that x number of days after chemo, he would be sick. Another x number of days and he would get crazy. So many more days, and he'd be grumpy, and so on.

My observation for those of you who are trying to track me goes something like this:

Day One of the Chemo Cycle: fatigue and general blah hidden behind false bravado.
Day Two: Sicker 'n a dog. Still energetic enough to run to bathroom.
Day Three; Sicker 'n a dog, part 2. The hiccups are totally debilitating. More like a quick shuffle to the bathroom.
Day Three; Sick as a cat with a hairball. Everything that was already in is on its way out. Where's my bucket?
Day Four; Not interested in anything or anybody
Day Five; Leave me alone, dammit.
Day Six; Okay, maybe I can do this
Day Seven: Damn, but I'm hungry.

Right, so a seven day cycle seems to be what we have to look forward to with the next go 'round. We start the chemo on February 20, 2008, and then again 21(ish) days later. With that sort of schedule, I don't see myself effectively back to work before the end of March... add another damn! to my accumulating list. The other thing that does concern me is that the chemo is midweek. That doesn't give me the two day weekend headstart before I need to go back to the Cross for radiation. That bucket could get quite the workout if we can't get the anti-nausea meds stabilized really quickly.