Side Effects - What Happened to my Palate?

Two weeks in and my taste-buds are still a little scrambled.  That's the biggest daily-affecting side effect so far.  Pre-chemo I was a big Diet Coke drinker.  Post-chemo I noticed that some of my sweet receptors have turned off or send a different signal.  Diet Coke doesn't have a sweet sensation anymore, and what's left of the potpourri of chemically concocted tastes isn't a good combination.  My youngest daughter will be happy with this turn of events, since she would really like to see me stop drinking the stuff.  

Some people treat carbonated beverages like poison.  You'd have thought then, that carbonated drinks and actual poison, i.e. chemotherapy drugs, would have conspired as allies, but instead I guess the chemo drugs don't appreciate the competition.

Last night we had pasta and broccoli for dinner.  The pasta tasted pretty good.  The broccoli on the other hand....let's just say that I eat it as a healthy vegetable, I usually don't eat broccoli and think "This really tastes great! - (unless it's smothered in cheese sauce and butter.  But, last night, my chemo-affected taste buds reported that the broccoli tasted worse than broccoli!  I ate one stalk, or tree or whatever one calls a chunk of broccoli, and discarded the rest.  It made me feel presidential:

"I do not like broccoli.  And I haven't liked it since I was a little kid and my mother made me eat it.  And I'm President of the United States and I'm not going to eat any more broccoli." - Pres. George H.W. Bush

Don't get me wrong.  I am eating good foods.  Some don't taste very good, and some don't have much taste at all.  

Ritz Crackers and the occasional Snickers are the winners so far.  They have not abandoned my receptors in their time of need.

Include me in your carbonated beverage toast tonight.  I won't be joining you.

"So, How Are You Doing?"

I finished my first full week with foreign chemical flowing through my body.  So, as many of my friends have asked, rather gingerly at times, “How are you doing?”

 

I have to say I’m doing better than I expected to be doing at this stage.  But then my expectations were based on a limited scope of knowledge.  Before you actually become a cancer patient yourself and you haven’t been around someone with cancer, you really can be pretty insulated from the process.  You hear about people going through cancer treatments; they lose their hair, lose weight, and they throw up a lot.  Then they either get better or follow a long downward glide towards an undesired outcome.

 

So, how am I doing?

 

On a very positive note, I have not been nauseous.  Not once.  Yay!  Nowadays I’ve been told that there are medications to help prevent the nausea, but having not experienced it, my nausea medicine is just sitting idle in its bottles.  Wendy suggested “Why take them if you’re not nauseas? There are two drugs I’m supposed to take in ping-pong fashion every four hours.  One has the side effect of “may cause headaches” and the other “may cause drowsiness.”  So  while nausea is avoiding me naturally, I don’t need to take on those side effects on  as well.

 

My taste buds feel like a my tongue has a cardboard filter.  Most food tastes kind of drab.  Sweets sneak through a little bit, but not enough to be very satisfying.  Crackers offer a decent eating experience with their salt and texture.  The worst so far was a fish sandwich. -  cardboard mush.

 

My voice this entire past week has been hoarse.  I sound like a guy who spent all day  yelling at a sporting event the day before.  It sounded a little more normal today.

 

My digestive tract is affected.  The plumbing is a little backed up.  Aaaand, that’s all you need to  know  about that.

 

My farsightedness is affected slightly.  Things are a little more blurry without glasses.  My eye doctor said that chemo can dry your eyes out a little, and vision can be affected as a result.

 

So, all things considered, not bad considering I’ve got a batch of cell killers and poison running through my veins. 

Explaining My Treatment - The Battle Within, Simplified

I’m getting two types of treatment, a “targeted therapy” drug and a regular chemotherapy drug.  Based on how the treatment was explained to me, here’s how I simplified it in anecdotal terms for the boys I teach on Sundays.  I’m picturing a battlefield within my body.

My basic problem is that enemy cells, i.e. lymphoma cancer cells, have made it past the white cell defenders at some point.  To make matters worse, these cancer cells have managed to mask themselves so that they convince the white cells that they are friend, not foe, and the white cells take no action.  In the meantime, the lymphoma cells wreak havoc, rapidly dividing and messing with the lymph nodes.  The swelling in my lymph nodes was the outward indicator that something was amiss inside, in spite of my white cells not taking action. 

Enter Rituxan, an elite defender, a targeted therapy drug.  Rituxan is infused into the bloodstream and specifically seeks out the lymphoma cells, and a Rituxan cell actually attaches itself to the lymphoma cell.  Once attached, the Rituxan alerts the white blood cells that the lymphoma cells are not friend but foe, and the white cells take them out.  It’s as if on the battlefield, Rituxan sneaks into the enemy tent and suddenly turns on the lights, the stereo, and a roadrunner shows up holding a sign with a big arrow pointing at the tent that says “Enemy! – Commence Fire!”  This battle began immediately when I received the drugs.  It may be my imagination, but I actually think some of my nodes have already reduced in swelling.

The second defender, old fashioned chemotherapy,  is on a mission to seek and destroy rapidly dividing cells.  The good news is that cancer cells are rapidly dividing.  The bad news is, other cells such bone marrow, digestive tract, and hair follicles are also rapidly dividing cells, and they get attacked in the battle as well.  That’s why a lot of patients lose their hair eventually. 

So I have an elite force seeking specific lymphoma cells, and a bomb squad blowing up anything in its way that rapidly divides.  It’s like a video game inside my body.

On a technical basis, the Rituxan tips off the white blood cells because it contains some type of genetic protein taken from mice.  Yeah, I had to hear that twice myself.  Mice.  It attaches itself to the lymphoma cells and the presence of the mouse material attached to the human cell immediately identifies the cancer cell as an enemy mutant worthy of destruction.

What an amazing drug.  This world needs fewer Wall Street moneychangers and more scientists.

Day 1 in the infusion Chair - Ups and Downs While Sitting Around

October 8th, 2014


 Day One in Infusion Center was a roller coaster ride.  The original estimate
was that I would be in for about 6 hours.  I ended up staying for over 10 hours. 


A little over a month ago I had a Bard Infusion Port surgically implanted in my
chest.  It's just under the skin, about the diameter of a quarter, with a bulb that looks like
the rubber primer bulb you push when you're priming a lawnmower or weed wacker engine.  When I get my drugs, they just pop a special needle through the skin into the port and away we go. (I tried to post a photo of the port, but couldn't convince my software to do so, sorry.)
This port taps into one of my main arteries with a direct path to the heart. (My wife figured out how to do that by other means, but that's a different story for a different blog...) 


I was given a large dose of Benadryl to  counteract any allergic reaction I might have due to
receiving the drug. First I had a bunch vital statistic and blood work done. After finding
coast is clear, they order the drug.  Nowadays drugs are so expensive, they don't want to pull a drug before they verify that (a) show up for my appointment and (b) my body statistics
verigied that I'm healthy enough to accept the drugs.


After the preliminaries, I was hooked up to Rituxin and away we go.  About and hour and one-half into it, my ears started scratching, soon my scalp was itching, and I had what felt like a hive the size of a golf ball in my throat.  I was having an allergic reaction. I was feeling
and talking like Mr. Smithers in "The Simpsons episode where he gets stung by a bee and has a reaction.Since I had a hive in my throat, they cut off the drugs and gave me more Benadryl to counterract the allergic reaction. They also gave me some steriods, ruining my remaining chances for a Major League Baseball career.  The itching went away fairly quickly, and the thoat issue about an hour later.  Then the cancer drug was resumed two hours later at a slower drip rate, neccesitating a longer episode.


In addition to the hives, I felt some flu-like symptoms, which was considered normal since the cell war within my body had begun immediately.  As the war begins, the white blood cells go to work contributing to the ill feeling.


Between the white cell battle and the Benedryl, I was pretty loopy.  Throw in the throat hive
affecting my speech along with the Benadryl affecting my brain, I was pretty incoherent for a
while.


The drugs resumed, I got my full dose, and I was out the door just over 10 & 1/4 hours.


Quite a day, ending on a positive, yet fatiguing note.
Thanks for reading.

How Did I End Up In A Chomotherapy Chair?

Today I'm sitting in a comfy chair at valley Medical Center in Renton, Washington getting my first dose of cancer-attacking drugs.  It's Day One of what may be a six-to-eight month process.  So, how did I get here?

Back in May 2014 I'd been doing a bunch of yard york - you know how after a lot ofphysical work you feel a few knots in your shoulders? (Especially if you are a desk jockey like I am.)  I felt a few small lumps between my neck and shoulders, attributing them to a couple of knots in the muscles due to overexertion. But these did't go away after a few days.  I really noticed that a small lump had shown up on my jaw-line beneath my left earlobe.  "I's probably nothing, or it could be something," I thought to myself. So I decided to get it checked out. 
I told a co-worker "I hope this is just a benign growth, and not something that is going to change my life for the next three years."

It turns out, this is something.

After two cell draws/biopsies, a bone marrow draw, an upper CAT Scan, a total body CAT Scan, a PET Scan, and a lymph node removal (that pesky initial jawline lump) over the course of two and a half months, I have been diagnosed with B-Cell Non-Hodgkins Lymphoma, a cancer of the lymph nodes.

Unlike a smoker getting lung cancer, for example, there isn't a specific cause.  Just the luck of the draw.  

Lymphoma is very treatable, and if you get the type I have, the odds are pretty good - just don't ask me the odds of getting lymphoma.  We are expecting a good outcome.

Before Michelle Obama took it upon herself to campaign for healthier school lunches, other First Ladies had their cause.  Nancy Reagan was "Say No to Drugs."  Sorry Nancy, today I am sauying yes to druges...and they're legal! And so it goes.

How Do You Name a Blog?

I need a blog title.  I decided that I would create a blog dedicated to my current battle with lymphoma.  First question is, what should I name my blog?  It should be a fairly easy name, both in the words and the spelling so people can find it.  And it should be in some way clever, since that’s my nature.

Some ideas: 

Lymphomation - Sounds too much like a dull, boring explanation of a disease.

Lymphunny - While I want to take an upbeat, and at times humorous approach to this blog,     “funny” in a cancer blog title seems somehow inappropriate.

Lymphomania -  Not sure what connotation this title provides other than the expectation that I would rip a t-shirt off at the beginning of each chemo treatment ala “Hulkamania.”

Glimpse-of-Lymph  - Huh?  Plus “glimpse” and “lymph” don’t actually rhyme.  It’s probably close enough for a rapper to force as a rhyme, but I’m not a rapper.

Lymphatic - I’d probably get sued for copyright infringement.  There’s got to be a drug on the market with this name.  I can see the TV ad now;  “Got Cancer?  Maybe you’re ready for…Lymphatic.”

Lymphomaniac -  Uh, this might raise more questions than answers.

TegTrek  -  OK, I like this one.  It’s probably available as a title , and as far as illnesses go, I am   truly “boldly going”  where I’ve never gone before. Plus, unlike lymphoma, it's spelled just like it sounds.

So TegTrek, it is.  If you’ve taken the time to read this far, I hope you’ll join me for future posts. 

I’m expecting that this Trek will have a happy ending.