Uttc's Blog

April 2, 2010

Had my first post-chemo CT this week.  Oncologist says it “looks great.”  All enlarged nodes are gone except for one that went from 7cm to 1.1 cm.  He said that is smaller than expected, and likely all scar tissue.  Blood counts still normal, as they have been throughout.

So, for now, I’m all clear concerning the cancer itself.  I still have some very bothersome side effects including lost hearing, digestion issues, and numbness/tingling/pain in the feet and fingers, but apparently the cancer is history.  For now anyway.  Next CT is 6 months from now, according to the oncologist’s recommendation.

It wasn’t fun, and I’m still not sure if I’d do it again, but at least it looks like the cancer is gone, and that was the number one goal.  If the side effects ease, I’ll be glad I did what I did.  If they worsen, I’ll have second thoughts.  Time will tell.

March 25

Its been a while, so time for an update.  Things have really changed.  On the good side, my taste buds have some back.  Still not like before chemo, but I can taste foods and beverages now, and have a full appetite.

My hearing is still shot.  NO CHANGE since last time.  Ringing and deafness.  Its often very hard to understand speech, even though I can hear the sounds.

I have developed very bothersome nuropathy in my feet and fingers.  My feet are constantly tingling.  They go numb after any amount of walking.  And, they often hurt, especially in the evenings and at night.  This is currently the worse side-effect I have going other than the permanent hearing damage.   My fingers are mostly just a little numb in the fingertips, but not too painful or tingly.  Daily foot pain is not fun though.

I still have some digestion problems, some kind of irratable bowel disease or something.  Without going into details, lets just say I haven’t had a “normal” stool in months.  Gassy, soft, sometimes liquid.  Quite often, when I have to go, I have to go “RIGHT NOW!”  Very hard to control. 

I’m still haveing some heartburn and indigestion issues as well, but not as bad as during the last rounds of chemo.

I have a CT scan scheduled for next week, but that won’t likely tell me much, and will be more of a baseline for more ct scans as time goes on.  I home the chemo worked, but I must honestly sway I have my doubts given my di9gestion problems.  There was cancer in the lymph nodes there, and I suspect there still is.  Time will tell.

Again, I reiterate, if you can avoid chemo, avoid it.  Accept the treatment only if you have no other choice or option for survival.  It has changed my quality of life forever.  NOT cancer, but CHEMO!

Feb. 18

Finally, some good news to report.  I’m actually feeling better the past couple of days.  I have a little bit of energy.  I have slept completely though the night the past two nights.  My bowel problems have improved so that I’m not afraid to eat.  Still not perfect digestion, but MUCH better than a week ago.  And, I can start to taste certain foods on the rear part of my tongue now.  Taste food!!!  That’s something I haven’t done in a while.

My hearing is still shot, but that won’t ever change, or so I’m still told.  Its just maddening.

As for the cancer, I won’t have a CT scan until the end of March, so I won’t know anything until then.  That will be a baseline, so I really won’t know if tumors are growing until a CT scan later in June or July.  Until then, its just live on and wonder.  I won’t be doing any chemo again regardless of the outcome.  It is what it is, but no more poison in my body. 

Now the question is, can I work and function in society with my hearing so damaged?  Only time will tell.  Hopefully everything else will return to something resembling normal in terms of taste, energy, and my digestive tract.

Feb. 9

If it’s not one damn thing, its another.

My blood test today showe my red blood cell count at 21, dangerously low.  Doctor doesn’t want it below 20, and its been falling for two weeks, so I need ANOTHER transfusion of blood tomorrow.  Digestive system is a little better, but still not right.  All other side effects remain unchanged  (deaf, no taste, no appetite, etc). 

If I can get lucky with two units of someone else’s blood again, it may be just what I need for some energy back.  If not, well, its been a good life I guess.  This will make 4 units of someone else’s blood, and that’s probably as dangerous as anything.  We all “carry” something.  Hopefully its relatively clean.

Feb. 5

OK, somewhat better news today.  I’m not feeling any worse, and have actually made fewer trips to the bathroom so far.  I slept MUCH better last night for the first time in several(only got up twice),  and have a tiny bit of appetite.

I still have all the miserable symptoms, but less severe, and less frequent than a co9uple of days ago.  Maybe I’ve seen the worst.  I sure hope so.  This has been the toughest week of my life,  physically.  Still have zero energy or strength.  But, maybe more good news in the days and weeks ahead?  Bring it on!

Feb. 3

Just fucking great.

Some kind of irritable bowel syndrome.  Hell, I’d rather have cancer, I think.  This is miserable.  When I have to go to the bathroom, which is every hour or two, and sometimes several times an hour, I have to go NOW!  If I don’t make it in 10 seconds, I wouldn’t make it at all.  So far, I’ve been lucky in that respect.

This is terrible though.  Not sure if its Crohns Disease or Ulcerative Colitis or Diverticulitis or what the hell.  I’ve never felt worse in my life though.

Yesterday I had blood drawn and met with the doctor.  Blood counts were within expected range.  I was infused with fluids though, since I couldn’t keep hydrated.  I’ve lost 11 pounds in 10 days, and I only weigh 131!  (5’7″)

I ate this morning for the first time in over 48 hours.  So far, no nausea.  But, the gas, diarreah, bloating, burning, pain, and bleeding are the worst things I’ve ever experienced.  And the pain from the abdomen and lower back all the way down to the exit hole is excrutiating and constant.  I’m sleeping only due to sleeping/pain meds.

Sorry to be so negative, but this is a warning to anyone considering chemo, and also a place for my whining hurting ass to vent a little.  I’m regretting getting chemo at this moment more than I ever have since day one.  I might have blown it.  I DID have some quality time left, probably quite a bit.  I hope I didnt’ throw what I had left away when I ok’d the chemo.  Being deaf, and not being able to be more than 10 seconds from a toilet is NOT living by my standards.

Maybe things will get better.  They damn well better!!!

If I could just get out and do SOMETHING.  I haven’t been able to do squat, except squat, for many weeks now.  I’ll keep this posted.

Feb. 1

I’m down for the fu**ing count now.  My ass has never been more sore, due to diarrea, gas, and mucus continually coming out my stool.  Its hourly.  I stopped eating yesterday, but there’s still crud inside me.  Add to that my body aching in every joint and muscle, and I can honestly say I’ve never in my life been more miserable.  Never.  Not sea sickness.  Not Gastroenteritis (which I’m starting to think I have.)  Just miserable from head to toe.  My dr’s appointment is at 10:10 am in the morning, if I can make it until then.

Knocked flat on my ass, literally.

January 30

Man, just as I was hoping to begin feeling better, it now feels like I’ve been hit with a truck, and it keeps running me over.  My body aches, I’m very tired, and have a feeling there might be another blood transfusion in my future.  My next scheduled blood test is in three days (Tuesday the 2nd), so I hope I at least last that long.  I’ve never felt so wiped out as I do this morning.  Just standing is hard.  Sleeping was near-impossible overnight.

Jan. 25

Well, round 4 has wiped me out kinda like round 3.  This morning, after 10 hours of sleep, I awake light headed, slightly dizzy, tired, and feeling like I really didn’t sleep much.  I wonder about blood counts, but have tests scheduled for just over a week from now.   I guess this is how its supposed to be.  Poison the body, hopefully kill the bad stuff, and the good grows back.  Or something like that.  I feel poisoned!

January 22, 2010

Well, I’ve just finished my last scheduled IV infusion of the four-round EP chemo.  Step one is done, but the process is nowhere near over.

Now its time for bi-weekly blood tests, and CT and PET scans sometime in March to see if any of the pre-chemo growths in the lymph nodes have shrunk or disappeared.  Due to their size from the beginning, I’ve  been advised that they will very likely not ever completely disappear.    Therefore, we will never really know if the cancer has all been killed by the chemo unless I have the lymph nodes removed in the future for biopsy.  If they’re positive, then more chemo.  If negative, more observation.

Should further CAT and PET scans later in the year show growth from the March scans, then one can assume the cancer is still there, and again, surgury would be the next step.  The RPLND surgury to remove the nodes is NO PICNIC and considered major surgery with a week-long hospital stay.  It involves a full incision from the lower abdomen to the upper chest–the whole stomach and chest.  All kinds of opporunities for complications.

The best outcome would be no lymph node growth in the next few years, and the cancer is gone, at least for now. 

Time will tell . . .

At least my weeks of sitting in a chair hooked up to an IV for 5 hours a day are over for a while!  Maybe someday my taste buds will come back, and I’ll get some energy back over time.  I’m tired of being a slug who can’t taste anything, has no appetite, and can barely hear anything.  The digestion mystery is getting old too.   Gas for a day, runs for a day, nothing for a day, heartburn for a day,  . . . Something new every day, but seldom “normal.”    My hearing is still shot, and they’re still saying “permanently” to that.   I’m also keeping my fingers crossed for no neuropathy.(numbness in hands and feet) in the next few weeks.  That’s a side effect that often shows up after treatment.  So far, so good on that one.