Throat Blog — Poor Taste

Ok, maybe you though I was going to talk about my sense of humor. A good guess, but no, this post is about how chemo has altered my sense of taste.

Around the end of round 1, I started having altered taste, and now it is pretty extreme. The altered taste falls into one of three categories:

  • Taste is modified to something usually bitter or bad in some other way.
  • Taste is muted to neutral “mush” taste.
  • Taste is amplified.

Example, most Mondays I go to a favorite Italian restaurant and get a cup of clam chowder and a Lance Armstrong (that is a side spaghetti with one meatball).

The noodles tasted fine. The marinara tasted metallic, and the meatball tasted like it had been soaked in acetone after the acetone had been used to clean engine parts.

Sweets and salts tend to be amplified. Umami flavors (mushrooms, cream, etc) tend to taste OK.

So, that, combined with a general lack of appetite and early satiation have me fighting to maintain a bantom weight of 121.7 lbs. As a point of reference, I weighed about 134 before the first cycle started on 8/23.

Doctor prescribed Dronabinol which is a man-made form of THC. It is supposed to help with appetite, and does not get you high. I’ve been trying it since Saturday and it might be helping a little…my weight has plateaued at 121.7 lbs. Hopefully it will stop dropping, now. I’m getting “crepe paper” skin all over.

I don’t feel particularly great, but also not particularly bad. Somewhere in the “meh” zone. No real nausea…but I’m sure if I kept eating after my “full” signals started firing that could quickly change. So, also trying to spread out the calories. Going to switch to some other side pasta (maybe Fungus Fettuccini). And, keep on keeping it down.

Last Week Really Sucked

Going into the Labor Day weekend with a kidney stone was bad enough, but starting in the middle of the night on Sunday, my backside actually did start hurting. Bad enough that I drove to UTSW ER at 7AM with intense (level 7-8) pain. They diagnosed as a thrombosed external hemorrhoid. ER team tried to cut it open and remove the clot, but all they were able to do was cut it open. The clot was too deep to reach. Sent me home with instructions to sitz bath every few hours with assurances that, while this would make it bleed a bit, it would also flush out the clot.

Four sitz baths later, and there had been no bleeding. And, pain had progressively gotten worse instead of better. So, around 10pm, made the drive back to UTSW ER. This time, at triage, they found I had a temperature of 102.2 F. Something they were much more worried about than my buttache. But, they did re-examine to make sure that the area had not become infected. What they found was a 2nd thrombosed hemorrhoid. They admitted me to the hospital, not for what I drove there for, but because my blood work showed that my neutrophil count was 0. Neutrophils typically make up over 50% of your white blood cells, and are the first line of defense against infection. 0 is bad.

They also found a little fluid in my lungs (not enough that they would normally worry about) and wrote me up as at risk of having pneumonia. I really didn’t feel any other symptoms that might point to pneumonia, but with the other pain going on (peaking at 9 if I coughed) it could certainly have been masked.

The main blessing of moving to a room was that I got to start on painkillers. I am not normally a major painkiller consumer. But, this time, I took both the Narco and the Dilaudid as often as they would give it to me.

Tuesday was not much better. Colo-rectal team came around and tentatively scheduled minor surgery to directly address the hemorrhoid situation. Urology came by to tentatively address the kidney stone (it had not passed, but was no longer hurting…they were concerned that that kidney might have been infected and would need a stent put in to drain away infected fluids so as to keep it from spreading (sepsis).

In the end, both procedures were nixed because of the whole neutropenia (low neutrophil) situation.

Meanwhile, I do need to cough pretty strongly to keep my airway clear of mucous. If I don’t I really wheeze. Alternatives are swabbing it out or using suction to clear it. But, both of those options really make me cough uncontrollably and deeply. Respiratory Therapy came in and decided that we should try suction. I warned them that making me cough hard resulted in agony. What I did not warn them about (because I did not yet know this) was that coughing hard would also make me loose all control of my hemorrhoid-ridden zone.

Sure enough, they poked the suction line too deep and I started coughing, probably crying, and most definitely pooping. It is the only time (well, that I know of) that I have been grateful that I have no sense of smell (well, the sense is there, but since I have no airflow through my nose, odors never make it to the sensors). Oh what fun. Well, at least it allowed me a trip to the shower (while the nurse and tech took care of the aftermath). Came back to clean bedding, and another dose of Dilaudid.

This happened twice more (with a bit more control, so a lot less mess) before I learned not to mess with my airway until about 10 minutes after a shot of Dilaudid to moderate the pain and cough. I had an idea that the doctors allowed…provide me with a numbing spray (benzocaine, in this case) that I could spray into my airway before messing with it. The caveats were that, a) since the area would be numb, I should be very careful not to injure myself, and b) if I did injure my airway even a little, I would likely have a horrible extended coughing fit when the numbness wore off. Believe me, I was very careful. This worked! I had no further problems after doing this.

Wednesday all departments finally decided that any surgical intervention of any kind was definitely off the table. So, I should have been allowed to start eating. But, one of the teams insisted that I have a swallow study before being allowed to eat. I asked why. The reason was, they didn’t read my entire chart (which, admittedly, must be novel-sized at this point). They were worried about risk of aspirating my food. What??!! I calmly (well, maybe not so calmly) explained that there was no connection between my mouth and my airway. The only way for me to aspirate food was for me to uncap my airway, take a bite and chew, then let the chewed food dribble down my neck into my stoma. I hope I am years away from being in that condition.

So, then they said I could have soft foods. Again, What!!??. I’ve been eating any- and everything for a month, now I need to start eating pap? They relented and allowed that I could eat whatever I wanted.

So, I ordered food. But, nothing tastes good, I seem to fill up quickly and, honestly, didn’t feel that much like eating in the first place. Appetite is in the basement. But, I tried to get down what I could several times a day.

Late on Wednesday, they decided that I should get a catheter, to be sure that urine wasn’t stranding in my bladder (which could have also caused the possible infected fluid behind the kidney stone to back up and cause sepsis). Fine, what is one more hose at this point.

Throughout, the hemorrhoid situation, basically left untreated, didn’t get any better. After each trip to the toilet, I had to use the shower for hygiene. Now, I say “basically untreated” but I did have 2% Lidocaine and a steroid/lidocaine mix (could only apply every 5 hours) to use to apply to the area. They helped, some, with the pain.

On Thursday, they started giving me shots to boost my neutrophil production. By Saturday, neutrophils were back to being on the low side of normal, and I hadn’t had a fever in a couple fo days.

On Friday, I talked them into stepping the Lidocaine to a 5% strength. That was a bit more help. Biggest trigger for the pain (other than cough) was going to the toilet. I would warn the nurse so that she would have the Dilaudid ready to shoot when I got back to the bed.

Anyone who has seen me in the hospital knows that as soon as I feel well enough to move around, I put on street clothes and move to the couch. It is telling, then, that this trip I never sat on the couch. And, because of the potential for accidents, wore only my hospital gown with nothing underneath. This, up to the hour before I was discharged.

Which brings us to Sunday. The hospitalist came in fairly early and let me know that I would be being discharged because labs and fever had both been good for a couple of days. I estimated 3pm. Sure enough, got the final paperwork at 3pm and they wheeled me down to the curb. But, before leaving they also had to remove the catheter, which they did around 11 AM. When I had my first bladder void (maybe 2 PM) I also passed the kidney stone (which, oddly enough, was about the size, shape, and color of an uncooked kidney bean). So, one less thing to worry about.

Driving home was painful, but getting home was good. Was able to sleep, uninterrupted by anything other than the cat (who was not nearly as manic as he had been after my two-month absence). And, in the days after coming home, my achy-brachy parts are no longer so achy. Not back to normal, but I’m able to sit at my desk for a major fraction of the day. Actually made it fully through the day on Monday, but Tuesday had to take off a bit early (pain, tiredness).

Back to being in a state of “I can sleep at any time…just let me close my eyes for a minute.” Although I sleep through most of the night, I must not be getting very deep sleep…I’m just flat-out sleepy. And, no pain meds (other than the topical ointments) since Monday, so can’t blame feeling dopey on dope.

Long post ending. While I had my laptop with me, I was never “with it” enough to write coherently. Chemo round 2 (for this treatment cycle) starts Friday. Stay tuned!