Uttc's Blog

Dec. 25

Little change from my last update.   Ears continue to ring, and hearing remains poor, and is seeming to get a little worse.  I’ll have more tests again next week, as well as begin another round of EP treatments on Monday the 27th.

 I’ve also had a slight digestion problem over the past few days, but nothing too serious, or so I hope.  Just loose, gaseous stools.  Immodium is partly working.  Still having some irregular sleep patterns, but have learned to stay up as late as possible so that I get a better night’s sleep. 

No major pains, no nausea (still!), and a decent amount of energy.

Dec. 19

Blood tests yesterday showed low counts, but the same as the last round.  Nothing to worry about.  Normal.

My hearng test was another story.  In just a week, there has been a further decrease in my hearing, and now at slightly lower frequencies than the ones identified last week.  Hearing loss has progressed, which I had assumed.  Ringing is still constant.  Certain tones have become more annoying and irritating.  It was explained that the “tolerable” tone window will shrink, and certain frequencies will become more annoying.

How far this will progress, nobody knows.   I can still hear, but it really sucks.  Music sounds bad, weak, and distant.  All sounds are annoying.  Some are downright terrible.

Dec. 16

It’s been one month since my first day of chemo treatments!!!  I shaved my head, but still have some hair!

Now, its four days since round two of treatment ended, and no major additional side effects besides the lack of taste in foods, constant ringing of the ears, and distant hearing.  Those are still my only ongoing side effects. 

I did over-exert myself a bit yesterday, which resulted in some neuropathy in my right leg and foot.  Just pain, but no tingling or numbness.  Legs and toes burned off and on, but are not as bad today.  No other problems other than boredom, and fatige after any activity.  Blood test Friday the 18th.  Next round of treatment starts Dec. 28.

Dec. 12

I’m back home today after the week of round-2 treatment in frozen SLC.  Had my hearing  “checked” yesterday.   Test  indicated that my hearing of high frequency sounds (over 4000) is going, going, gone.  Yeah, I knew that!   The ringing in both ears has not changed, and drives me nuts.  Neither the audiologist or oncologist will offer a prognosis, though both say its “unusual”  for these symptoms of ototoxity and ringing to occur so soon into treatment. 

On the positive side, treatment went well this week.  ONE vein, ONE IV all week!  No major side effects except a little fatigue today.   Two rounds down, two to go.  Hopefully, the reduced dosage of Cisplantin by 20 percent will not hurt the outcome of killing the cancer.  Even more hopefully, I’ll keep my hearing.  Everything else seems to be going as I would have hoped, given the circumstances.

Dec. 8

Following treatment today, I got in to see my regular oncologist.  He was able to answer some of my basic questions.  However, he indicated that the effects of reducing the amount of Cisplantin I’m receiving by 20 percent (35mg to 28mg) are not certain.  He did say that my hearing would likely continue to decline without reducing the dose of Cisplantin.

I have an appointment with audiologist on Friday following treatment to have my hearing checked to see what the effect really is so far, and to establish a baseline for further tests. 

Otherwise, my treatments so far this week  have had little effect on me.  No major side effects, no fatigue, very little indigestion, just boring smooth sailing, medically.

The hearing loss and explanations are what’s frustrating.  Maybe I’ll be lucky and still have hearing after all this, and the reduced dosage of Cisplantin will still kill off the cancer.  That’s what I need.

Dec. 7

I made it into SLC in between snow storms last night, and had an easy commute to the cancer center this morning for a blood test and the first day of round-2 chemo.  Oh, I was feeling good and strong this morning, and it was was a good thing because shit kinda hit the fan.

First, I had an 8:oo appointment, but got in at 8:40.  Something about the roads and people running late.   Ever hear of leaving early when it’s snowing?

My hero Dave hit the first vein he tried, nearly pain free, and got the IV in to draw blood and later administer the drugs.  Yahoo Dave!  Easiest poke so-far!

Then I got pissed.  While discussing the results  of my blood work with a doctor I hadn’t seen before (because the one I saw two weeks ago was out today)  I mentioned my hearing loss and ringing.  She was very alarmed, especially when I told her the previous doctor had told me nearly two weeks ago that it was very likely temporary.  She exclaimed, “That’s permanent!”  I had wondered about that, after just a little research on the matter.  So, she consulted quickly with an oncologist here on duty, and both agreed I they should drop my dose of Cisplantin by 20 percent.  That’s the drug that causes the hearing loss and ringing side effect.  (Ototoxicity and Tunnitus)

Okay, that sounds all right, but how does it effect treatment outcomes?  Neither one had an answer.  So, they’re reducing my drug dosage, WITHOUT KNOWING THE EFFECT IT WILL HAVE ON MY CANCER TREATMENT!!  You’ve got to be fucking kidding me!!  They don’t know if it wll effect ototoxicity either, but its something to try.

They said they would ask my specialist tomorrow, when he was in.  This just pisses me off.  “Tomorrow isn’t good enough when I’m undergoing treatment today, and all week.

Come to find out, I have also been given mis-information about pain medicines.  I was told by a nurse on day one of treatment to avoid Advil and take Tylenol for minor pain.  OK.  Then, I was told a week later by doctor number one that Advil was perfectly fine, and worked better for pain.  (he was right, it does work much better for me than Tylenol).  Now today, the new doctor, filling in for the first doctor, who was filling in for the specialist, says DO NOT take Advil because of its effects on my kidney, which is also being toxified by the Cisplantin.

What the Fuck??? 

The specialist is supposed to be in tomorrow, and I’m seeing him if I have to tear the place down.  I chose him, based on national recommendations by the best in their field in this type of cancer.  I’m paying him.  I want HIM.

Aside from doctor advice and hearing issues, treatment today has been uneventful.  Lots of peeing!  That’s good!  They also added an infusion of heartburn medication (Zantac), so I’m hoping I won’t get heartburn and indigestion as bad during this round.  Time will tell, as always.  The whole process is a calculated crap shoot.  That’s chemo.  That’s cancer treatment.  That’s medical treatment in many cases.

Dec. 6

Well, today I must try and make the drive back to SLC to start round two of treatments tomorrow.  Its currently a blizzard outside, and I’m not sure if roads will remain open this morning or not.  Its going to be an adventure, that’s for sure.  160 miles will likely take 4-5  hours.

I’ve had a pretty easy past few days.  Not near as much tiredness, easy digestion of everything, and feeling pretty good really.  Except, of course, that ringing of the ears and messed up hearing. 

I’m not looking forward to more needles and poison in my system.  But, its gotta be done now.

Dec. 2

Will I ever hear correctly again?  As I read more experiences, I begin to wonder.  The rest of my life with ringing ears, not being able to even hear certain sounds, music completely gone from my life, and certain hi pitched sounds soundling like bombs? I can’t even listen to music right now, it all sounds horrible. Any high pitched voice sounds like screaming in my ear. Any contact sound of two objects colliding is amplified, but at lower volume, if that makes sense.  My ears are just extremely sensitive to certain sounds, even though the volume is turned down to half. All sounds are messed up. Lower pitches I can’t even hear. And that constant ringing has me living on Tylenol/Advil to keep the headaches down.

This has me worried more than living with cancer. Honestly. I could have gone on for a few years enjoying life since my cancer never slowed me down one bit. Yes, it finally would have, but at least I’d have had a few more good years where I could work and enjoy the sounds of life. Right now, I’m wondering if I’ll ever have another day where I can hear clearly and be a productive member of society (meaning working for a living!).  For some, it goes away in a few months, or a year, or more.  For some, it NEVER ever goes away, and they’re half deaf for life.  Time will tell I guess, but I”m not liking my odds considering how soon after treatment began that it started, with no stopping  in sight.

Other than that, I’m feeling fine today!  No aches, no digestion problems, and yet another very good night’s sleep.  I”m not even that tired this morning, and feel like I could go fishing if it wasn’t snowing out side and 8 degrees!  Screw that.   I should be getting treatment in the tropics!  (Hindsight)

Dec. 1

Wow.  I’m actually feeling pretty good this morning.   Had a great night’s sleep, for a change.  Just the ringing ears and lack of taste remain.  No Advil or Tylenol in 24 hours!  (That hasn’t happened in over a week)  Even a little energy.  There ARE good days between treatments! 

I also know I’m feeling better because I’m craving a cigarette for the first time in weeks (since I quit).  They really haven’t sounded good or been wanted since treatment started.  This morning, for some reason, I’d light one right up if it were handy.  DAMN!  I MUST win the battle to stop this,  just as importantly as beating the cancer.  Lung cancer kills at a FAR higher rate than the testicular cancer that I have, and my lungs are “clear” on the last x-ray.