Barrios World

I have from time to time thought, mainly during a long sermon at church when my mind wonders the most, if I had to give up an arm or a leg, which one I would choose.  Funny, how many crazy ideas come up in church.  I hope my pastor isn’t reading this.  And I’ve also from time to time thought of which of the five senses I would give up if I had to give one up.  Certainly sight wouldn’t be one, and hearing isn’t one of the top two on the list either but how about the sense of smell, or touch or even taste.  Whoever thinks of losing their taste.

For the past couple of weeks I have not been able to taste anything.  Friends have been asking me what that feels like.  Well for me it has been pretty bad.  Mainly because I never ate to live, I always lived to eat.  I love food and it’s because of the taste.  I love complex tastes, and simple flavors.  I love flavors that most would agree complement each other like peanut butter and jelly, and even some that don’t seem to go together.  Salty potato chips with cottage cheese, dark chocolate with a dry red wine, French toast made with savory herb bread, jalapeños and jelly, and an onion bagel, cream cheese with strawberry preserves served with steaming black coffee.  I miss it.

Right now I can only describe my sense of taste as distant.  Frustrating, like not being able to see a road sign from a short distance or not being able to read a menu in dim lighting.  Curious, it’s like not being able to hear the whole conversation just every now and then a faint whisper of a loud noise.  Everything seems foggy and distant.  Like touching something while your hand is asleep, still tingling to wake up.  That is how I taste.  I know the morsel is in my mouth, the texture I can feel and the temperature is evident.  I imagine I can taste it, but is it really the taste, or is it mostly what I remember the taste to be.  Very much like if taste had a shadow that is what I would see, but I continue to eat hoping the next bite will satisfy the one taste bud that I seem to always have left.  It doesn’t.

I see everyone around me enjoying the food, the smiles, the pleasure that a taste brings to the senses.  I took my daughter to The Bistro 157 in Valpo and introduced her to the flourless chocolate cake.  I watched her as she took the first taste, and I heard a giggle.  I made a house guest some French toast with savory herb bread and real maple syrup not too long ago; he had never had French toast.  I saw him take a big bite and watched him look longingly down at his plate and smile, he didn’t have to say anything, I could see pleasure in his face.

I’ve met so many people that eat to live especially as I’ve had time to talk to different people in hospital waiting rooms, I never understood that mind.  I never understood how someone could say they were hungry and order a delicious appetizer and not finish it, or not take just a small taste of an awesome smelling freshly baked bread because they weren’t hungry.  Now I do.

I eat to survive.  I eat because the doctor and the nurse will yell at me if I don’t eat.  Having no taste, I eat 2 or 3 chicken wings, and I’m done.  Or 4 clam strips and that’s enough chewing and I’m tired of having to swallow.  The other day I didn’t finish a small bowl of vegetable soup and only took one bite of my homemade bread.  I dread having to go find something to make for dinner.  The worst part, I can still smell the food.

I’ve been told to expect the loss of taste to be with me 3 to 6 weeks after my last treatment, which is the 5^th of February, so I expect some help from my friends when my taste buds come back.  How is that you may ask… well, let’s just start off with an easy one.  I love pancakes, and I think I make some of the best pancakes around from scratch, and you probably make some pretty good ones too.  So we can eliminate your house and mine.  I need suggestions as to where I can get the best pancakes (locally) at a restaurant.  But I will also take suggestions from any other restaurant on the planet, since I never know if I may one day visit that place.

Thanks for reading my blog.  And don’t forget those suggestions.

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It’s been awhile, November 5^th to be exact.  The last couple of chemo treatments have been tough, so I haven’t felt much like writing.  For those of you reading this on Facebook, I still from time to time post on my wall about my journey through one of life’s complexities.

Today was fun, well… let me go back a few weeks.  After my fourth treatment of chemo I went through a battery of tests to see where I stood with my lymphoma.  The tumor in my neck was physically gone, but that had disappeared a long time ago.  The new tests would show hyper active cells (cancerous cells are normally more active than normal cells) but none were found.  So my oncologist told me since there were no hyper-active cells I was literally cancer free at this point but there was still a lot of work left to do.  One would be radiation.  Because of the size of my tumor at the start, it was a no-brainer.  Back in July, when I was first diagnosed, I was told I would go through chemotherapy and possibly radiation.  But now, since there was no sign of a tumor, he wanted a second and third opinion from his colleagues about radiation, the consensus was that I should go through the procedure.  I finished my chemo treatments on November 24^th, two days before Thanksgiving and just this past Wednesday I had my first consultation with the radiation specialist.

TODAY… I went in for my radiation simulation session.  I’m not sure if it’s because I’m male or a techie, I don’t like to read instruction or information sheets until completely necessary.  So I was sort of clueless as to what this simulation entailed.  I had heard the doctor on my initial visit tell me that I would be getting a mold made of my head so that I would be placed in the same position every day when I was administered the radiation.  This morning I decide to read the information sheet they handed me and it said nothing about a mask, but a permanent tattoo to daily locate the area of treatment.  Wait a minute, I didn’t want permanent tattoos on my neck.  So I was a little more nervous now of this procedure.

I arrived early at the hospital and all the way there thinking of how I was going to get out of getting the tattoos and instead getting that mask thing-a-ma-jig.  The best one I could come up with was that it was against my religion to tattoo my body.  The waiting room was half full, and there were a few people waiting at the counter.  I thought to myself, this is going to be longer morning than I thought.  But no, I was signaled by a staff member to come straight through and by-pass everyone there.  They didn’t even need my name.  I guess that hospital has now become my home away from home.  My Cheers pub if you will… where everyone knows your name.

I was escorted to another one of those rooms with the hi-tech machinery.  I guess all these rooms are the same.  They are all dimly lit just with enough ambient lighting to showcase all the StarTrek lights, arms, flashing bulbs, round things, and oscillating scopes.  The technician was in a good mood which made me feel better.  She told me I was getting the mask.  I was relieved and told her the info sheet said nothing about the mask and that I would be getting tattooed.  She offered to tattoo me, but I told her unless it was a rose or a little teddy bear with I LOVE GEORGE on it, I wasn’t interested.

I was told to lie on a bench in front of the machine, why are these benches so narrow?  She heated up this nylon thing which looked like something I would skim my pool with and told me it would be a few minutes.  I was just about asleep when I heard her in the room.  She told me that it would feel just like a facial.  She asked if I was claustrophobic about just the time when she was slamming this plastic leaf catcher over my face.  Holy smoke, the thing was hot!  She stretched it over my face quickly as I was gasping for air and in one fell swoop locked in place to the table at each ear and at the top of my head.  The thing quickly cooled and I could tell that my head was now locked in place.  I wanted to laugh, but I couldn’t open my mouth.  I wanted to, but wonder if I coughed… I think my head would explode.  Good thing I held it in.  Actually, it didn’t feel so bad; I may make an appointment at my local spa for a facial soon.

The sad part, because of my Quasimodo body, my shoulders were too high and they were in the way of the radiation “beam” ok, I’m not sure that it is a beam, but that’s what I’m calling it for now.  So, I had to go through this whole procedure again.  But this time, my wrists were tied and stretched by straps towards the bottom of the table, forcefully pulling my shoulders away from their natural position which is next to my neck and now my head was forced into an uncomfortable chin tilted up fashion by a contraption behind my neck.  Another plastic thing was being heated up for the second try.  But this time it reminded me of a giant fly swatter without the handle.  Again it was stretched over my face and locked into position.  Now I was giggling, thinking… Hannibal Lecter.  Ok, I’m no Thomas Harris, but I wonder if Steven Kings comes up with stuff from his own experiences.

The good of it… I got to keep the messed up mask!  I also get the other mask, but they will keep it for now until I’m finished with my radiation.  So, I’m going to take pictures of it, and post it soon.  I’m thinking if I need money real bad, I may auction it off.  It is wall art of my face!

After the simulation the doctor went over some previous scans with me.  And he didn’t have much encouragement for me.  But he didn’t have anything to say that was discouraging either.  I will have another scan done this Wednesday to finalize the mapping of my radiation treatments.

I’m still not sure when they will actually begin.

It’s been a long time since I’ve written a blog.  I’ve been busy… not really, just lazy.  Many times I think, wow, I should blog about this or that.  But then I wonder if my blog will be funny or thought provoking and just thinking about it becomes a chore.

But real quick, here is my most recent thought.  It about my hair… or lack of it, I thought it would be easy to take care of when I didn’t have any to take care of.  But, I have found out that it’s harder to take care of hair when it’s cut so short… that I have to trim it almost every day to keep it even.  Did I tell you that my hair has started to grow back even still being on my chemo.

When it was longer, or when I had hair… I shampooed it, and then I towel dried it… and then I brushed it, and sometimes added some “product”.  But that all took a few minutes, maybe 2 at the most.

Now… every other day I have to pull the clippers out… and I have to trim my peach fuzz with three different settings.  Setting three, I buzz the whole head.  Setting two… I buzz the sides.  And then finally setting three, which there isn’t a closer setting I buzz just above the ears.  I hear the hair cut is officially called a “High and Tight”.  It is just too hard to maintain.

Well, this is the eve of my finding out how I am doing with my chemo treatments.  I’ve been holding up pretty well, but I don’t know how much more I can handle.  My closest friends can probably tell how tough it has been on me, but I keep that chin up.  I try to think good thoughts, and hope for the best.  Lately, I was encouraged by the “Hands Around the Square”.  There are real people wanting to make a difference.  Whether it will happen in their lifetime I believe is not their goal, but having a purpose fulfills their life.  I like that.

I need to keep strong, with a purpose and I will be fine.

PS… Thanks Larry, for the invite.

Now that was nasty. This is the first time that I have had chemo at the full rate. The first two sessions the drugs were dripped in slowly. Actually, the first time chemo was administered over a two-day span, a total of 11 hours. Three weeks ago the chemo cocktail of drugs was started with a slow drip and gradually it became a trickle and that was increased until it was an open faucet, comparatively speaking. It still took almost 6 hours. Today they plugged me in and off I went to the races. They started me at maximum drip velocity. The “R” in the R+CHOP chemo treatment was administered in 90 minutes compared to the first time of 7 ½ hours. Total time was just a bit over 4 hours. However…

I now have an unpleasant taste in my mouth, my eyes hurt, everything smells weird, and I feel totally wiped out. Disoriented is a good word, I was thankful that a friend was with me because I’m not so sure it would have been safe for me to drive. Coming from me, I think it’s a big deal with my “can do attitude”. Did I tell you I got the dreaded flu shot too? First time in my life, but the doctor strongly suggested it and everyone in the room was cheering me on, so I couldn’t say no. Even though I protested and using their logic that “everyone was getting the shot” I said then if everyone is getting one, why do I need it? No one will be sick so how can I catch the flu? Ok, it was funny at the time.

I wanted to ride my bike this afternoon… but maybe I’ll just lay down for a little bit. It looks like rain anyway.

Tomorrow… I’ll just have to wait and see what is in store. I hope I feel fine, but this is not a good start, this is the weirdest I have ever felt.

I went in last Thursday for the second of my six scheduled tri-weekly chemotherapy sessions.  From the beginning I had decided that if I was allowed I would try to go alone to all the session except for my first even though  I wasn’t sure how I would react to the chemo.  But sitting there for so many hours could wear anyone down, nonetheless, several friends and of course family members have volunteered to chauffeur me there and sit with me.  Thank you all for your generosity.  I did drive myself, and I’m thinking for the next one I will ride my bike, weather permitting.  It would only be a 20-mile round trip.

Even though I was told that she would be by the hospital to see me I was still surprised to see my friend stop by to keep me company.  It was nice that she didn’t make me feel like she was having pity on me or helping me out, she was genuinely interested in what I was going through.  She does have that inquisitive personality and I appreciated her stopping in, it was nice to catch up on conversation even though it felt brief.

My hair has finally begun to fall out.  I’m not sure what to do about it.  Not so much that it’s falling out, but where it is landing.  This morning I blamed the dog for molting on the sofa.  As I approached the dark spot on the cushion I noticed it wasn’t that soft plume of wispy hair that belonged to the sprite 6 pound Papillion, but it was this mat of tough, course, short black hair.  Yikes, it was mine.  I almost felt I should apologize to the dog, but he and I don’t get along very well.  So I apologized to the cat.  Not that I like the cat either, but she leaves me alone and does her own thing, whatever that is all day.

I quickly went and cropped as much hair as I could with the clippers.  I still can’t bring myself to shave it off.  For so many years, since I was young, I wanted to sport a crew cut, or even the bald look.  But I never got the nerve because I had so much hair and just wanted to keep it.  This is my chance and I still have reservations of scalping myself.  Funny how we react to things when it comes down to it, and it’s the thing we’ve wanted to do.  I have been cutting my own hair for years and it is comical to me that now when I don’t have hair I want to go to a professional so I can be done right.

The one thing that I am celebrating this week… is that I am tape free!  And also stitch free.  From all my surgeries, all the tests, and all the pokes, where I am quickly applied some sort of sticky strip I now have none.  Last Thursday they cleaned my tape from my portacath surgery, but after chemo they stuck tape over my portacath again.  Then I went in for the booster shot on Friday and they applied more tape.  But, I quickly pulled them off when I showered.  So I celebrate!  It’s the little things that make me happy now.

I have felt a little more of the side effects this time of chemo.  But they are not too bad so far.  I will keep riding my bike, working out, and eating healthy.  I will continue in my steadfast course and continue with my goals in my physical and spiritual well-being by the strength of my Faith which God has given me.

Thank you all for reading my blog and if I don’t get hit by a car while riding my bike, or some other bizarre problem comes up, I will be back to write some more.

I haven’t been keeping up with my blog for a few weeks because I’ve been busy with my birthday celebrations and just the day to day stuff.

I had been drooling over a bike called the Roubaix made by Specialized.  The cyclist who won the Paris-Roubaix 2009 cycling classic from Compiègne to Roubaix over 259.5 km was on the bike that I had been coveting for some time.  Of course, that exact bike would be financially out of reach for someone like me.  But my friends made it possible for me to get the Secteur Elite which is modeled exactly from the Roubaix and made by the same company.  This is one sweet bike and relatively affordable.

Many of my friends came over and we had a cookout with tons of food, Anita had organized the party and I believe Yara and Anita had come up with the idea to give me a bike for my birthday.  I understand that Yara was already ahead of Anita in setting up the gift idea, it was an amazing gift.  Of course I was all choked up and there was no speech given.  But it was a wonderful evening. I have been riding it every day since I got it.  I was bio-fitted for the bike and after two days of measuring and setting up I was able to ride my bike.  The first day I got it I rode 45 miles and most of it in a heavy down pour.  A crazy friend rode with me for 20 plus miles.  We were soaked when we finished the ride.  It was wonderful.

There is so much I want to tell you about this bike, but most of it is technical so I won’t bore you with the details.  But I still need to get a few more things and I will be set.  I had hoped to ride to Indianapolis, it probably won’t happen this year even though it had been a goal when I got the bike.  But I have been able to ride 20 to 30 miles daily.

I am scheduled for my second dose of chemotherapy on Thursday.  I have been told that it only gets worse from here.  I have been able to do just about everything I was doing before the tumor.  I have not been on the treadmill, but I have been very active and even gaining a little weight, which is a no no.

Of course I’m not looking forward to the chemo, my tumor is practically gone and no one would even know I was sick.  I wish I could just say,” hey… this is good enough; I’m done with the chemo thing.”  I did cut my hair just shy of a high and tight marine haircut in anticipation of losing my hair.  Well, I still haven’t lost my hair, except for the stuff I chopped off.  Now I’m beginning to think the doctors were playing a joke on me.  But, I’m beginning to really like this hairdo.  I step out of the shower and I don’t even have to brush my hair, all I do is run my hands from the back of my head to the front and I’m done.

I’d like to thank Anita and all my friends again.  I continually am amazed by my friends and what they have done for me.  I have some amazing true friends.  I can’t say enough of their generosity and their love for friendship.  I have been truly blessed.I will write more from my chemo chair.  I imagine I won’t have anything better to do.  Although, I did receive a book for my birthday that I’m looking forward to reading soon, I’ll be back.