July 15, 2015: Mid-Term Exam TIme

July 2015 - Mid-Term Exam Time

I haven’t posted for quite a while, since this cancer treatment has settled in like a cross country run.  It’s not a sprint, it’s a marathon.  The process at times has been repetitive and mundane, except for the part where I remind myself that I am in a process of being poisoned enough to kill cancer cells in my bone marrow while not being poisoned enough to kill off the rest of me! 

I had a CAT scan after my fifth of eighth scheduled cycle of drug treatments back in March 2015, and the results, as my physician said, showed “dramatic improvement.”  That was definitely good news, and, as a fellow cancer-survivor acquaintance of mine said, “Cancer physicians are not in the habit of using hyperbole or exaggerations; they don’t want to give you anything but reality regarding a cancer diagnosis.”

The results were positive enough, that my physician cancelled the eighth of my scheduled eight monthly cycles of treatments, receiving the last full dose of drugs the last week of March.

Since then, the plan has been to let the drugs run their course, and then in the summer, run a battery of tests to see exactly where I am at in the recovery process, what I call my Mid-Term Exam, and tomorrow, June 15, 2015 is the big day.  I’m getting a CAT scan, a PET scan and some blood draws.  No fun, but as I often tell people, it’s for a good cause: me!

Barring some unexpected outcomes, the next phase of treatment for me is a two-year routine of targeted drug treatments, using a drug that strictly goes after lymphoma cells.  The treatment cycle will be one day a week for four consecutive weeks, and then off for two months, and then another four-week cycle of treatments and so-on. 

I’ll be interested to see what the side effects of the targeted lymphoma drugs will be without the companion chemotherapy drugs which I’ve had flowing through me since October 2014.  The side effects so far have been miserable, but not terrible, especially when I compare my experience to what others who have suffered much worse under the influence of chemotherapy.

I’ve been blessed thus far, and hope I remain in God’s good graces.  2015 is a good year to have the disease I have.

Random thoughts:

It makes me feel empathetically sad whenever I hear about a pediatric cancer patient, especially when I hear they are getting “aggressive” chemotherapy.  I feel I’ve had “standard” chemotherapy, if there is such a thing, and it cause for some miserable days.

My taste buds got messed up, and three months past my most recent chemo blast I I still find some foods which should taste good to be the opposite, or tasteless.

I’ve received a lot of compliments from friend and co-workers, which help keep me going and staying positive.  Who doesn’t like to be told “You look good.”? Parenthetically, they may be thinking, “compared to how bad you looked some says at the height of your treatments,” but hey, I’ll take it.

People have asked me what getting chemotherapy drugs is like.  I feel my best description is, for me anyway, that it feels like having the flu, only without the joint pain and the fever.  The insides just feel unsettled.  I’ve had hot flashes and chills.  I’ve burped too much at both ends of the digestive system.  My energy wanes, and it seems if I overdo it one day, I pay for it the next day.  If I feel good today, I think I should feel a little better tomorrow, charting my feelings like a linear graph.  Instead, a graph of my feelings would look more like the stock market, with inexplicable ups and downs.

So, that’s where I’m at.  I still have a wife and children who love me , I have reliable health insurance, and I have a firm faith in Jesus Christ to sustain me.  And I have friends, like you.  Thanks for reading, and for your kind words.

-          Robert/Bob/Rob/Opa/Brother Tegeder/Hey You

I Thought My Taste Buds Were Bad Before.....

As I remind myself and others, this treatment program is not a sprint, it's a marathon.  Having passed the halfway point in my treatment schedule, I feel like I'm on a distance run at the point where you're just putting one foot in front of the other.  I find myself looking forward the finish line in April, while dreading the remaining three treatment cycles.

I'm getting a cumulative effect, where the previous does hasn't completely ended its effects, when another load comes in.  The side effects seem to hit faster and harder in this fifth cycle.  My voice is already hoarse. (It doesn't hurt or feel like a sore throat, but it sounds like it.)  My taste buds are really shot this time.  Here's what tastes normal, so far in my informal poll:

Potatoes
Corn
Rice
Some hard candies

and,...that's about it.  Just about all sweets, meats, fruits and vegetables either taste like nothing, taste off, or just plain taste bad.

Oh well, it beats the alternative, which is not treating the disease.

In the meantime, I'll look forward to a spring/summer day when I get a clear bill of health and my taste buds return.  That will be a great day!

I the meantime, excuse me while I go have a snack on...uh...nothing.

So, How Are You Doing?

I get that question a lot.  I'm glad people feel confident enough to ask, rather than avoiding asking, not knowing quite what to say, or not wanting to hear a bunch of bad news.  I usually give the straight scoop, usually sprinkled with a smile and a touch of humor.

I am doing well, all things considered.  I've not had to miss a day of work that wasn't a treatment day. I've left work a little early a few times when I was tired or just didn't feel good.  But as an accountant, I am mostly sitting in front of a computer.  How hard can it be, right?

I've had three rounds of treatment, and have noticed a cumulative effect.  When I was first diagnosed, I was ready to get going...as one would say in their best Schwarzenegger voice "Let's Do This." Round One was a jolt to the system initially, but I felt I was feeling surprisingly good for the remaining four weeks.  Round Two came with a few added side effects, and I would get tired at the end of the day. I strive to get to bed by nine to give myself a good shot at proper rest. Round Three was a lot tougher.

I started Round Three, the first Wed-Fri in December, by getting an allergic reaction to one of the drugs. I got the chills and my teeth were chattering  like I was in Alaska.  But I was in a heated hospital room with my gift quilt (thank you, Yvonne Hamilton) and three heated blankets the hospital had for just such a reaction.  Took a while to get stabilized.  Then I was pretty wiped out for the weekend.  It felt like I had the flu, just without the fever and joint pain.

My taste bud are pretty shot, and nothing much tastes good.  Root beer and potato products are my remaining friends.  Most chocolates and fruits, once allies, offer little flavor anymore.  Kinda depressing.  Sometimes I feel flushed, sometimes my lips tingle.  I'm a "morning person" but some mornings I feel pretty lousy.  But...

I live with an angel.  Wendy has been very empathetic.  I can put on my "game face" at work and church.  Wendy gets me the rest of the time when the game face doesn't fit very well.  I truly believe prayers on my behalf are being answered.  I attribute the curing effects thus far on the wisdom and knowledge of the medical world, and attribute my well-being during this process to the power of many prayers.  I have felt lifted up at times.  I am a disciple of Jesus Christ.

Round Four begins tomorrow, New Year's Eve.  I don't know what you'll be doing for New Year's Eve, but this guy from the 60's is taking drugs...lots of them.  Street value: $0.00. Happy New Year!

End of Round One-Miscellaneous Thoughts

My friends and associates have been very kind during this past month as word has traveled about my affliction.  I haven't been nauseous, have only lost a few pounds, and move around like I always have.    People greet me, and with a little hesitation and a slight element of surprise say "You look good." That is a pleasant substitute for what they were probably thinking which was  "I thought you'd look terrible, but you don't look any worse than you usually do."

There have been many kind gestures this past month.  Yvonne Hamilton, a friend in my Latter-Day Saint congregation made a quilt for me.  She gave it to me, telling me that she heard some people get cold when getting chemotherapy and that she thought I could use something to keep me warm.  It is not a mere quilt - Yvonne stitched positive words and phrases in the quilt as well, such as "strength ," "tender mercies," "grandchildren," etc.  Pretty cool.

Craig Fuller, a guy who grew up in my church years ago and I had a chance to coach in basketball, registered to do the stair-climb for lymphoma at the Columbia Tower in Downtown Seattle. He's dedicating his climb to me and his Uncle who also has/had lymphoma. A humbling gesture for which I will be raising donations for his 1,331-stair climb.

Many co-workers have offered help, and it has been appreciated.

Prior to my first surgery related to this cancer, I was given a Priesthood blessing by my home teacher.  In it, I remember he said that I was blessed with my wife who would be an angel to me.  Wendy has certainly been that and more.

Now, if you'll excuse me, I'm off to my second round of drug infusions...

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.